Newsletter – May 2025

Hello to all East Midlands’ people with Parkinson’s (PwP) and those further afield, their carers, families, health professionals and others reading this May 2025 edition of the PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars, including talks from our successful Face 2 Face meeting of September 2024.

PEMRIG is one of thirteen Parkinson’s UK affiliated ‘Research Interest Groups’ around the UK. The aim of the RIGs is to interest PwPs, their carers and friends in the exciting Parkinson’s research going on in the UK and all round the world. By following the research, we can see that steady progress is being made to understand and conquer Parkinson’s’.

If you know of anyone who would like to be added to the mailing list for this monthly online newsletter, please contact Liz Nash, PEMRIG’s acting Chair and Research Support Network Lead at Parkinson's UK by email at: lnash@parkinsons.org.uk

Podcast of the month

The No Silver Bullet 4PD team have produced a new quite short You Tube video with another expert answering further questions about Mucuna pruriens. Check out No 6 in the forthcoming talks section below.

SIGN THE PARKY PETITION –

A new petition asking for Increased funding for people with Parkinson’s and the implementation of the "Parky Charter" has been started. The petition which is supported by Parkinson’s UK, Cure Parkinson’s and Spotlight YOPD aims to reach 100,000 signatures at which point it will be considered for debate in Parliament. So far over 18,000 signatures have been collected so there is a long way to go. Please use this link to access the petition and sign.

WHAT’S NEW FROM PEMRIG?

May 6th from 12.00 midday to 1.00pm - a research talk from Dr Tom Payne of Sheffield about his research on what goes wrong with mitochondria in Parkinson’s. (see Forthcoming talks No 4 below). This talk will be recorded for the PEMRIG website so you can catch it later if you don’t want to hear it over lunchtime. If you want to submit a question in advance, please email it to: docpete920@gmail.com. Questions about aspects of your own Parkinson’s journey, diagnosis, medication, etc., should be put to your consultant or GP.

Next from PEMRIG: a 2-3 speaker online research session in the Autumn. The talks will emphasise the female perspective in Parkinson’s. More information in later newsletters!

FORTHCOMING AND RECENT TALKS ABOUT PARKINSON’S

What a shame talks 1 and 2 advertised below clash when they are both of such importance! Recordings of these sessions will be included in future newsletters so you can catch both talks later. Prof Tansey’s talk at No 1 below is in the no Silver Bullet 4PD series.

1. Inflammation and Parkinson’s - what can we do about it?

Speaker: Professor Malu Tansey,

When: Thursday, May 15th, 3.00pm

Register at: https://www.eventbrite.co.uk/e/inflammation-and-parkinsons-and-what-we-can-do-about-it-by-pr-malu-tansey-tickets-1339485149139?aff=oddtdtcreator

Prof Tansey will talk about the hot topic of inflammation and Parkinson’s. She will discuss the latest research about inflammation in Parkinson’s and what can be done to combat it.

Malú Tansey is a leading neuroscientist whose work focuses on understanding how inflammation and immune system responses affect brain health and contribute to neurodegenerative diseases. Currently, she holds the Norman and Susan Fixel Chair in Neuroscience and Neurology at the University of Florida College of Medicine in Gainesville. She also serves as Co-Director of the Centre for Translational Research in Neurodegenerative Disease. Her laboratory is dedicated to discovering ways to diagnose neurodegenerative diseases earlier and to develop better treatments to prevent or slow their progression.

2. CELL REPLACEMENT THERAPIES FOR PARKINSONS: THE LATEST!

WHEN: Thursday, May 15th, 14.00-17.00 BST

This special three-hour webinar is patient-focussed and will offer a unique opportunity for participants to engage with researchers in the cell replacement field.

Cure Parkinson’s is supporting the next G-Force PD meeting, an international consortium dedicated to advancing cell replacement therapies for Parkinson’s. This global initiative brings together leading stem cell scientists to accelerate treatments that replace dopamine-producing nerve cells lost in Parkinson’s. Alongside this, Cure Parkinson's is hosting a free hybrid event to give participants the opportunity to hear directly from and ask questions to leading researchers in this field, including Professor Roger Barker from Cambridge University and Dr Agnete Kirkeby from Lund University.

Agenda (TBC)

2.15 pm - Welcome and opening remarks – Cure Parkinson’s

2.20 pm - Overview of the field - Dr Agnete Kirkeby, Lund University

3.15 pm - Participation: a personal view - Professor Roger Barker, Cambridge University

3.45 pm - Tea and coffee break

4.15 pm - Panel discussion and Q&A: Considerations around cell and complex therapies

5.00 pm - Closing remarks.

This meeting will be held at the Royal Society of Medicine, 1 Wimpole St, London W1G 0AE.

Register to attend online or in-person using this link.

3. TACKLING HALLUCINATIONS AND DELUSIONS IN PARKINSON’S

WHEN: Wednesday May 14th, 11.00am to 12.00 midday, online via zoom

In this webinar a panel of PwP and experts will be discussing

●       What hallucinations and delusions are, how they may affect you and why,

●       Tips to help you manage hallucinations and delusions, and

●       How you can take part in Parkinson’s UK’s funded TOP HAT and CAN-OP trials

Since 2019 PUK have been funding research to find new ways to help people manage hallucinations and delusions. PUK are now looking for PwP across the UK to take part - see ‘TRIALS ‘section below.  If you have any questions about this webinar, contact the Research Engagement Manager Alex Edwards at aedwards@parkinsons/org.uk. Register for this webinar at: this link.

4. ‘MOVING TOWARDS PERSONALISED MEDICINE IN PARKINSON’S, HOW CAN WE TARGET MITOCHONDRIA?’

Speaker: Dr Tom Payne, NIHR Clinical Lecturer in Neurology at the Sheffield Institute for Translational Neuroscience

When: Online Tuesday, May 6th 12.00-1.00pm.  Register for this talk here.

Dr Payne writes: My main areas of interest are neuroimaging (with a focus on MRI), early phase clinical trials and the identification of mitochondrial dysfunction in Parkinson’s. My research aims to develop effective tools to stratify Parkinson’s disease both clinically and according to the specific underlying pathogenic mechanism in an individual, such as mitochondrial dysfunction to ultimately move towards more personalised medicine approaches in Parkinson’s.

5. WOMEN'S HEALTH AND PARKINSON’S

Speaker: Dr Tanya Denne ND,

When: April 30th, 7.30pm to 9.00pm (GMT+1)

This webinar is dedicated to exploring the intersection of menopause, hormones, and Parkinson’s. A recording of this Q & A session is now available at: https://www.youtube.com/watch?v=EBWkENFa1N4

6. MUCUNA AND PARKINSON’S: AN EXPERT ANSWERS YOUR QUESTIONS

Speaker: Dr Tanya Denne

Due to continued interest in Mucuna pruriens, the legume rich in levodopa, the No Silver bullet 4PD team have organised this extra Q & A session about Mucuna with another expert on the subject. You can access this Q and A session using this link: https://www.youtube.com/watch?v=NBDdtuNk_mk

Since 2010 Dr Denne has researched Mucuna for its potential in treating Parkinson’s. Having been mentored by Dr Laura Mischley, she chose her Naturopathic Medical School with a focus on serving the Parkinson’s community. Dr Denne treats the whole person with a personalised holistic approach and she specialises in optimising care plans and addressing treatment gaps. Driven by her passion for public health, she joined Dr Roberto Cilia in Ghana in February to help tackle Parkinson’s care in countries where Mucuna is sometimes all t

 NB. This talk is intended for informational and educational purposes only. If you're seeking advice about using Mucuna you should contact your consultant.

7. A NEW PARKINSON’S TEST-HYPE OR HOPE?

This NoSilverBullet4PD talk by Dr Espay on April 14th was about the new alpha-synuclein seed amplification assay (αSyn-SAA) which has been described by the M J Fox Foundation as a significant breakthrough in the search for a Parkinson’s biomarker. The speaker discussed the limitations and potential benefits of the αSyn-SAA test and what it could mean. He comes to the conclusion that this new test is useful for confirming a diagnosis of Parkinson’s. He disagreed with the M J Fox Foundation about their conclusions as to the significance of the test results.

David Valerio on the PEMRIG steering group commented ‘Enjoyed the talk by Prof Espay - erudite questioning and intricate, felt there were some good if subtle argument and felt this difference in phase between the good liquid synuclein and the bad precipitated form was key to his view. He is strong in his view that the Fox Foundation is going in the wrong direction’.

Editor adds: I had to listen to Dr Espay’s very engaging and enthusiastic talk several times to appreciate his message which is that the M J Fox foundation is heading in the wrong direction with defining this test as diagnosing Parkinson’s. In Dr Espay’s view a positive a-Syn-SAA test only helps to confirm a diagnosis of Parkinson’s already made. He made clear the differences between active soluble (liquid) monomeric α-Syn and the non-active precipitated (aggregated) form which causes problems in Parkinson’s. He urged PwP not to enter a-Syn trials as a way of sending a message to the Fox Foundation that they were misinterpreting this test. During questions he suggested that Cure Parkinson’s and Parkinson’s UK were having second thoughts about this assay and what its results indicate. Perhaps one or both of these UK Parkinson’s Charities would care to comment……….?

You can catch this talk again at: https://www.youtube.com/watch?v=UpXekSBBQJsIPPPP .

8. ‘FINDING NEW DRUGS FOR PARKINSON’S USING NEURONS PRODUCED FROM STEM CELLS'.                          

Speaker: Prof Tilo Kunath, University of Edinburgh. March 27th.

Editor notes: This was a really interesting webinar which demonstrated the advanced technologies now being used to investigate the effect of drugs for slowing and reversing Parkinson’s using dopaminergic neurones grown from induced pluripotent stem cells (iPSCs).  What stood out was the length of time in weeks that it takes to produce the dopaminergic neurones from the iPSCs which are firstly  derived from skin cells before any experiments can begin. The work in the lab revolves around understanding how α-synuclein misfolds and aggregates to form Lewy Bodies. Results of a promising drug were described. A brief tour round the laboratory was followed by an informative Q & A session. If you missed this talk, I really recommend listening to it if only to marvel at the cutting-edge technology being used. You can listen to this webinar again at this link.

9. CURE PARKINSON’S SPRING RESEARCH UPDATE MEETING

Theme: ‘Investigating Ambroxol: a pivotal next step in the search for Parkinson’s Treatments’.

This meeting, focused on the latest updates on the Phase 3 clinical trial for Ambroxol, ASPro-PD, which begins this spring. In fact the first volunteer has been appointed  so this trial is underway. Attendees also heard from PD Frontline, a remote study offering online genetic testing for people with Parkinson’s and about the pathways to getting involved in future clinical trials. If you missed this webinar, you can catch it again at this link: https://cureparkinsons.org.uk/2025/02/spring-research-update-meeting-2025/.

10. ‘SLEEP CHALLENGES IN PARKINSON’S DISEASE’. Professor S. Overeem, a distinguished sleep researcher, gave this talk in the Nosilverbullet4PD series on March 13th. You can access a recording at: https://www.youtube.com/watch?v=3J0pd7Lnvfs.

PARKINSON’S RESEARCH NEWS - WHAT’S GOING ON LOCALLY?

Editor: Following Dr Carlo Breda’s defence of fruit flies as a valuable tool for Parkinson’s research in the April newsletter I have found that another group at De Montfort University, Leicester, are also using fruit flies in their Parkinson’s research.  Professor Nicoleta Moisoi , Dr. Yullli Pasos and Dr. Laura Smith have combined their skills to form a multidisciplinary team with expertise in Parkinson’s models, cellular and molecular biology and microbiology to study

‘MICROBIOME-BRAIN INTERACTIONS IN PARKINSON’S NEURODEGENERATION: THE EFFECT OF MICROBIOTA MODULATION IN A PINK1 MUTANT FRUIT FLY MODEL OF PARKINSON’S’

Professor Moisoi writes: In recent years there has been increasing evidence that Parkinson’s is not only a disease of the brain, but that it is also linked to the gut and the microbes that populate it, the microbiome. Thus, a holistic approach for the treatment of Parkinson’s by looking at the patient in an integrated manner may improve patient outcomes. There is increasing evidence that there are differences in the types and populations of microbes that populate the gut of people with Parkinson’s (PwP) when compared to those found in healthy individuals, and these differences may play an important role in triggering the disease and how it progresses.

Knowing this, therapeutic approaches are being developed for Parkinson’s that would change the microbial content of the gut, either by administering specific bacteria using probiotic foods or through changing the microbes found in the colon. Due to various experimental challenges however, the precise mechanisms by which differences in the microbiome affect the progression of Parkinson’s are not yet fully understood.

In this project we use fruit flies with a dysfunction in mitochondria quality control previously linked to Parkinson’s, namely the Pink1 loss-of-function, and wild-type control flies. We have administered four different types of bacteria that have been found to be changed in Parkinson’s patients, and we employ an integrated approach to advance our understanding of how administration of different bacteria to fruit fly models of Parkinson’s may affect their Parkinson’s - related characteristics including survival, ability to move, and gut health. Surprisingly, we have found that two of the bacteria have beneficial effects, whereas the other two have negative effects. The figure (below) shows our approach.  One of the bacterial species administered, Escherichia coli, enhances the life span and improves the motor ability of both the wild type and the Pink1 mutant flies. As we were investigating the effect of microbiota modulation, we decided that assessment of intestinal parameters was essential particularly through the link of Parkinson’s with gastrointestinal problems. Hence, we performed one analysis of constipation by counting the droppings of the flies over a set period of time, and a second analysis of gut leakage by administering food with a blue dye, which in flies with gut leakage, leads to blue colouring of the fly abdomen  (B in diagram left). Thus, we demonstrated that ageing causes constipation in the fruit-fly, and the phenomenon is especially pronounced in the Pink1 mutant, Parkinson’s model flies. Furthermore, the Pink1 flies have increased gut leakage while microbiome modulation with E. coli supplementation rescued the intestinal barrier integrity.

We have also analysed the molecular changes at the level of gene expression following microbiota modulation on wild type and Pink1 flies. Although some molecular pathways were altered in multiple conditions, the changes varied from each comparison we made. Therefore, each bacterial change to the fruit fly seems to play a different role in modulating gene expression. The changes were also variable depending on whether the flies were wild type or the mutant form.

Bacterial modulation had an impact on several metabolism pathways. Among the changes, we can highlight the enhancement in amino acid metabolism in PINK1 flies. RNA sequencing data analysis also showed that supplementation with E. coli led to an increase in the metabolism of short-chain fatty acids, which are known to reduce inflammation and improve gut health. Therefore, we have shown that introducing one bacterial species to the fruit fly microbiota causes behaviour and physiological changes, and these alterations are different depending on the bacterial strain introduced. Our results show that this study model is promising in enabling us to understand the effect of microbiome dysbiosis in Parkinson’s. This work is now being written up for publication.

Editor adds: Many thanks to Professor Moisoi and her colleagues at de Montfort and please keep up the good work.

PARKINSON’S TRIALS NEEDING VOLUNTEERS

Don’t forget, by volunteering for many of these opportunities you are consenting to your email being shared with the researcher(s) involved in the project.

1. SLEEP DISTURBANCES IN PARKINSON’S

Molly Hughes, a trainee clinical psychologist at Lancaster University, is examining the impact that sleep disturbances have on people with Parkinson’s and their partners. She’ll explore this through interviews with people affected by Parkinson’s. Molly hopes her research will help researchers and healthcare professionals understand the impact of sleep disturbances on people with Parkinson’s and their partners and help inform the design of future interventions.

Before the interviews take place, Molly would like advice on how to make the interviews as comfortable as possible for future participants.

What is involved? Have a conversation of up to 1 hour with Molly to share your thoughts on:

●       The importance of the research topic, and

●       How to make the interviews as comfortable as possible for future participants

When? At a date to be arranged between you between:

●       8 May: 9am-2pm, 4-5pm

●       14 May: 9am-5pm

Where? Via telephone or video call, according to your preference

Who? People with Parkinson’s and their partners

How do I get involved? Express your interest by emailing Molly at m.hughes15@lancaster.ac.uk )  by Monday April 28th if you would be interested in sharing your thoughts. Please include in your email: 

●       Your connection to Parkinson’s

●       Whether you would rather have a conversation via video call or over the phone 

Please copy researchinvolvement@parkinsons.org.uk into your email to Molly.  Support can be provided with joining a video call. You will be offered a voucher in recognition of your time. You can read our guidance on payments at this link: file:///C:/Users/marti_gjx9avw/Downloads/Guidance%20for%20PPI%20contributors%20on%20receiving%20payment%20and%20recognition.pdf

Editor notes: Molly’s April 24th deadline will have passed by the time you receive this May newsletter but if you are  interested in helping Molly, email her anyway and ask if she still needs help.

2. THE IMPACT OF WALKING SPORTS ON PARKINSON’S

Liam Harper, from Manchester Metropolitan University is applying for a Parkinson’s UK Non-Drug Approaches Grant. He will explore if walking sports such as walking football or walking tennis are beneficial to people with Parkinson’s. Before Liam applies, he is holding an online discussion group to  get the views of PwP on the aims of the research, and his research plans.

When: During the week beginning May 5th but see below April 30th deadline for letting Liam know.

Who is needed: People with Parkinson’s and their carers and friends who can join online

What: You will participate in a discussion of up to 1.5 hours.

How to get involved: Please email Liam at L.Harper@mmu.ac.uk if you would be interested in attending the discussion group remembering to include in your email: 

●       Your connection to Parkinson’s 

●       Your availability for a meeting on Tuesday 6 May, Wednesday 7 May, or Friday 9 May

●       If you, or the person you support, has taken part in any walking sports.

●       Please copy researchinvolvement@parkinsons.org.uk into your reply to Liam.

If there are any adjustments we can make to help you get involved, please get in touch with Liam at the above address. Please express your interest by Wednesday 30 April. If Liam receives more interest than he has spaces for he will use the information shared in the expression of interest to try to ensure as diverse a range of perspectives as possible.

Editor adds: If you have missed this April 30th deadline it could be worth emailing Liam to check whether you can still be involved.

3. NEW WAYS TO DIAGNOSE PARKINSON’S

Angeleen Fleming from the University of Cambridge is planning a study to look at new ways to diagnose Parkinson’s, Alzheimer’s and dementia. Angeleen has designed a survey to understand the challenges involved with getting a diagnosis. She and her fellow researchers will use the results of the survey to shape their research priorities in the future.

What is involved? Answer a survey online, by post or by phone to share your experiences and thoughts on receiving a diagnosis of Parkinson’s. The survey will take approximately 7-10 minutes to complete. You can access the survey online, at this link.

Who is needed? People with Parkison’s and carers.

When? By 31 May 2025.

If you would like any further information, would prefer to complete the survey over the phone or on a paper copy, please contact Angeleen Fleming at af425@cam.ac.uk

4. TESTING WHETHER THE LICENSED DRUG ONDANSETRON CAN TREAT PARKINSON’S HALLUCINATIONS

As many as 3 out of 4 people with Parkinson's may experience hallucinations or delusions. A hallucination is when you see, hear or feel things that aren't there. Delusions are unusual thoughts, beliefs or worries that aren't based on reality. At the moment, existing treatments can come with unwanted side effects and treatments aren't available to everyone.

The TOP HAT clinical trial has been readvertised because more volunteers are needed test whether the licensed drug, ondansetron, can help treat the visual hallucinations experienced by PwP or dementia with Lewy bodies. If the research shows that the drug is beneficial, ondansetron could be available to combat hallucinations within the next few years.

Who is needed? The study needs 306 people diagnosed with Parkinson’s or with Lewy Body dementia (LBD) who

●       experience visual hallucinations at least once a week,

●       are not taking apomophine or any anti-psychotic medication, and

●       have been taking a stable dose of Parkinson’s or LBD medication for 28 days before starting the trial.

What is involved? The first activity is a telephone chat to discuss the research more fully and to complete some questionnaires. This will be followed by a brief face to face visit to assess your Parkinson’s, to take a blood sample and to monitor your heart rhythm.

If you are eligible to take part you will either receive ondansetron or dummy medication tablets for 12 weeks. These will be shipped to you by a courier. The research team will maintain regular contact throughout to take assessments and to let you know how much medication to take. This contact will be by telephone, video call and face to face. Three F2F meetings are required and for some research sites home visit may be an option.

The deadline to apply to volunteer for this trial is July 1st, 2025. For more information please read the Participant information sheet available at this link. or contact the TOP HAT team by email at o.zubko@ucla.ac.uk.

5.  VISUALISING HALLUCINATIONS IN PARKINSON’S

Researchers at the University of Sussex are developing a computer model that aims to visualise hallucinations experienced by some people with Parkinson’s or Lewy Body dementia. They want to compare the images the model produces to descriptions of actual hallucinations. By creating a simulation of visual hallucinations, the researchers hope to understand why they happen.

Who is needed? The researchers need 30 people with Parkinson’s or Lewy Body Dementia who currently experience visual hallucinations. This could include seeing things that aren’t there and mistaking objects for other things.  You must be able to access the internet.

What’s involved? You will take part in an online video interview where you will be asked about your experience of visual hallucinations. For more details read the information sheet available here. If you are interested in taking part, please contact Dr David Schwarzman by email at d.schwartzman@sussex ac.uk or by phone on 07709 918 923. You can register to take part here.

6. GET IT ON TIME: PARKINSON'S MEDICATION MANAGEMENT WHILE IN HOSPITAL

The researchers aim to determine whether missed or delayed medication while PwP are staying in hospital can lead to health problems and unnecessarily extended hospital stays. 

They need 350 people with Parkinson’s, who are taking Parkinson’s medication and who have recently had a hospital visit or have a visit planned in the near future.

What’s involved? You will be asked to complete one survey per month for 6 months following a hospital visit. The surveys can be completed online or by post and will take 30-40 minutes to complete.

For more information, please read the participant information sheet.

If you are interested in taking part please register your interest by following this link.  The deadline for taking part in this research is 1 June 2025.

 If you would like to take part by post or have any questions, please contact Chesney Craig by email at c.craig@mmu.ac.uk or phone at 0161 247 5538. 

7. STEPS 2 - CAN ELECTRICAL STIMULATION IMPROVE WALKING?

Researchers from the Salisbury District Hospital and the University of Plymouth want to understand if a small electrical stimulation device can improve walking for people with Parkinson’s.

Functional Electrical Stimulation (FES) is a technique that applies small electrical impulses through self-adhesive pads. These pads are placed on the skin over nerves that supply muscles that cause the foot to lift. Early testing suggests this may help to retrain movement.

The researchers need to recruit 234 people with Parkinson’s who have difficulty walking due to Parkinson’s, can walk 50 metres with walking aids, and can stand from sitting without assistance from another person.

What is involved?

If you are eligible to take part, you will either receive the study treatment, FES, for 18 weeks or your usual care for 22 weeks. You will be asked to attend visits to your local research site which are at Salisbury, Leeds, Swansea, Birmingham, Bangor or Cumbria.

Those receiving the study treatment, will attend 10 visits and those receiving usual care will attend 6 visits. The length of these visits will vary between 1 and 2 hours during which you will take part in tests to measure your movement, Parkinson’s symptoms, and you will be asked to complete surveys. You will also be asked to complete a falls and exercise diary for the duration of the study. Travel expenses will be reimbursed.

Read the participant information sheet at participant information sheet for more information. Then contact the study team by email at steps2.penctu@plymouth.ac.uk.

The deadline for taking part in this research is 31 August 2025. Unfortunately, those receiving Deep Brain Stimulation (DBS) or using other active medical implanted devices, such as a pacemaker, are unable to take part.

CURE PARKINSON’S/PARKINSON’S UK JOINT ‘GET INVOLVED IN RESEARCH’ LEAFLET.

Cure Parkinson’s and Parkinson’s UK have put together a co-branded leaflet with a number of ongoing opportunities to get involved in research for people with Parkinson’s in the UK: click here to access the leaflet.

PARKINSON’S UK RESEARCH SUPPORT NETWORK. This site advertises other trials needing volunteers. So click on the Take Part Hub on the Parkinson’s UK website to find other research projects needing volunteers.

Newsletter comments, queries, corrections, arguments, and submissions to the Editor (Martin Rumsby) at: martin69747@gmail.com. If you have any top tips for coping with your Parkinson’s, special diets, exercise regimes, etc., that you would like to share with us in this Newsletter, email the editor.

Any mistakes in the details above are entirely the fault of the Editor!

Parkinson's UK is registered at 50 Broadway London, City of London, SW1H 0DB, GB and is the operating name of the Parkinson's Disease Society of the United Kingdom.  A registered charity in GB (258197), and in Scotland (SC037554).

 Parkinson's UK accepts no liability for the content of this email or for the consequences of any actions taken on the basis of the information provided, unless that information is subsequently confirmed in writing.  Any views or opinions presented in this email are solely those of the author and do not necessarily represent those of the charity.

Newsletter – January 2025

PEMRIG wishes all people with Parkinson’s, their carers, helpers and medical professionals, a happy new year!

Hello to all East Midlands’ and wider people with Parkinson’s (PwPs), carers, families, health professionals and others reading this January 2025 edition of the PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars, including talks from our successful Face 2 Face meeting last September.

PEMRIG is one of thirteen Parkinson’s UK affiliated ‘Research Interest Groups’ around the UK. The aim of the RIGs is to interest PwPs and their carers in the exciting Parkinson’s research going on in the UK and all round the world. By following the research, we see that progress is being made to understand and conquer Parkinson’s’.

If you would like to be put on PEMRIG’s mailing list for this monthly newsletter, please contact Liz Nash, Research Support Network Lead at Parkinson's UK (PUK), by email at: lnash@parkinsons.org.uk

A THOUGHT ABOUT RESEARCH FOR 2025!

The Editor writes: Not long ago I got rather upset when on an online branch call to promote a PEMRIG research seminar, a person commented very forcibly ‘research is a waste of money, there haven’t been any new disease-modifying treatments to stop or slow Parkinson progression for 20 or more years, the money would be better spent supporting PwP right now’. It’s hard to disagree with this point of view - research does cost a lot of money (think eg converting skin cells to stem cells to dopaminergic neurones), progress is slow (think eg precision, reproducibility, safety, trials taking years, testing hundreds of potential drugs) and it cloaks itself in a specialised language that most of us PwP can’t understand. So little wonder some become disillusioned. But even the most sceptical must agree that the only way a disease-modifying drug to slow or reverse Parkinson’s progression will be found is through more and more research. And steady progress is being made as McFarthing and colleagues concluded last January in their annual survey (1) where they wrote ‘The drug development pipeline for Parkinson’s is robust, but more progress needs to be made with late-stage testing of treatments to slow the disease’. It’s that last bit underlined which is very disappointing as the crucial late-stage testing is needed to get the results which could get a new drug into the clinic. Hopefully, their next report to be published soon will show that more disease-modifying drugs have got into late-stage testing in 2024 or if not, will explain what the problem is!

Finding the cure for Parkinson’s is in the hands of a relatively few dedicated researchers and some lay PwP on research committees to guide direction. As research gets underway again in 2025, we the more than 145,000 PwP in the UK and many more world-wide say to all those researching Parkinson’s ‘best wishes for good results in 2025 and please keep up the good work.’

1.  K. McFarthing et al. (2024) Parkinson’s Disease Drug Therapies in the Clinical Trial Pipeline: 2024 Update. Journal of Parkinson’s Disease vol 14, pages 899–912.

STOP PRESS – NEW URGENT APPEAL

VOLUNTEERS WITH PARKINSON’S ARE NEEDED AT NOTTINGHAM UNIVERSITY FOR RESEARCH INTO REDUCING TREMOR

About the study: Dr Kat Gialopsou of the School of Psychiatry at the University of Nottingham needs 30 PwP to take part in an exciting research study to explore a safe, non-invasive technique to reduce tremor inParkinson’s. This new technique involves, median nerve stimulation (MNS), combined with brain activity monitoring using EEG.  The team are investigating how different frequencies of gentle wrist stimulation (MNS) affect Parkinson’s symptoms, such as tremor, and influence brain activity. This promising approach has already shown success in managing symptoms of other neurological conditions. Their research aims to identify the optimal stimulation frequency for tremor relief in individuals with Parkinson’s.

What Does the Study Involve? Participants will take part in 3 study sessions, each spaced at least 2 days apart. Session 1: Lasts approximately 3 hours (includes questionnaires and baseline measurements). Sessions 2 and 3: Each less than 2 hours.

During each session, you will: Receive wrist stimulation (median nerve stimulation) at different frequencies in each session. The stimulation lasts less than 30 minutes. And you will have your brain activity recorded using electroencephalography (EEG). This is a non-invasive technique that measures electrical activity in the brain using small sensors placed on the scalp.

Who Can Participate? Adults diagnosed with Parkinson’s, can attend 3 sessions at our research facility and have not received any neurostimulation in a 6-month period before the study starts. Anyone with a pacemaker or insulin pump cannot participate.

Where Does the Study Take Place? The sessions will be held at the School of Psychology, Park Campus, University of Nottingham, with Kat’s experienced and friendly research team ensuring your comfort and safety throughout. Blue badge parking slots are available if needed and water is available. There is lift access to our study room. Expenses are available for volunteers coming from outside Nottingham - see information sheet!

To register your interest and/or to request more information contact Kat by email at kat.gialopsou@nottingham.ac.uk or at lpzkg@nottingham.ac.uk

FORTHCOMING AND RECENT PAST TALKS ABOUT PARKINSON’S.

1. ‘PARKINSON’S RESEARCH TAKEAWAYS FROM 2024 AND RESEARCH TO BE LOOKING OUT FOR IN 2025.’ Dr Simon Stott, January 13th, 7.30pm.

This is the first No Silver Bullet 4PD talk in 2025 and if you feel that Parkinson’s research isn’t getting anywhere you should listen to this survey of Parkinson’s drug trials which are in progress, which are due to report results this year and which may be starting up and require volunteers.

Dr Simon Stott is Head of Research at the Cure Parkinson’s Trust and he also maintains the 'Science of Parkinson's' website  at www.scienceofparkinsons.com which attempts to explain in plain English the research currently being conducted on Parkinson's. If you get this notice in time reserve a spot for Dr Stott’s talk with Everbrite at this link. 

If you miss the talk look out for a link to a recording in next month’s newsletter.

2. ‘PREVENTING PARKINSON’S DISEASE’ by Dr Ray Dorsey.

This was a talk in the No Silver bullet series held Monday, December 16th at 7.30pm. Ray Dorsey is a Professor of Neurology and director of the Center for Human Experimental Therapeutics at the University of Rochester Medical Centre. He is working to identify and eliminate the root causes of Parkinson's. He is co-author of the book, "Ending Parkinson's Disease" in which he, Bas Bloem, Michael Okun and Todd Sherer lay out a plan to help prevent Parkinson's and improve care and treatment.

Dr. Dorsey is investigating new treatments for movement disorders and is working on ways to improve the way care is delivered for individuals with Parkinson's and other neurological disorders. Using simple web-based video conferencing, he and his colleagues are seeking to provide care to individuals with Parkinson's.

Ray Dorsey’s talk can be heard again at this link.

3. ASPro-PD study'

The PD Frontline research study team held a webinar on December 12th 2024 to hear updates about trials available to people who have taken part in the PD Frontline study. PD Frontline involves providing a saliva sample, which is then analysed to look for changes in genes that are associated with Parkinson's.

This talk described the upcoming ASPro-PD study, a trial of a cough medicine called Ambroxol which in preliminary studies seems to slow Parkinson’s progression. This trial will be recruiting in 2025 so if you are interested in participating it could be worth listening to the webinar. See this newsletter’s section on Parkinson’s research below. To access the recording of the talk, copy this link into your browser: https://youtu.be/GEnR3insFuU.

4. ‘TAKING PART IN PARKINSON’S RESEARCH’

This was the theme of a recent Cure Parkinson’s meeting held on November 27th. Speakers and topics were: Dr Simon Stott, Cure Parkinson’s – ‘Cure Parkinson’s Research Update Autumn 2024; Dr Bina Patel, University of Cambridge – ‘DAPA-PD: background and set-up of the trial’ (with Q&A session);Anaya Navangul, Cure Parkinson’s – ‘Getting involved in research: focus groups, patient advocacy and trials recruiting’;Dr Chengsheng Ju, UCL – ‘Trial emulation to assess effect of LTRAs on Parkinson’s and  neuropsychiatric events; Georgia Mills, UCL – ‘EJS ACT-PD: A MAMS UK Platform Trial to Accelerate Research for Parkinson’s’, and Prof Tom Foltynie, UCL – ‘Initial findings from the Exenatide PD-3 trial and panel Q&A session’.

The recording of these talks can be accessed here.. Note that due to publication restrictions, the Exenatide-PD3 presentation will not be available to watch now until the full results are published next year. The recording will then be made available.

5. ‘MENTAL WELLBEING for PEOPLE WITH PARKINSON’S - A Team Approach, November 23rd, 2024  The Southeast Research Interest Group’s Autumn Research Conference included the following speakers and talks: Emma Edwards, Parkinson’s Specialist Nurse: ‘Parkinson’s and how to optimise our mental health’ Dr Ian Cuthbert, Clinical Psychologist: ‘Anxiety and Parkinson’s - Causes and Effects’ and Dr Emma Travers-Hill, Specialist in Brief Psychological Interventions, and Delyse Hammet, Counsellor: ‘Counselling, Emotional Support and Self-Help Strategies’

If you want to hear these helpful talks or listen to them again click this link.

6. PAR-CON 2024 and Parkinson’s UK AGM, October 2024

This excellent 2-day event held in October 2024 was organised by PwP’s for PwP’s. There were talks by experts on Revolutionary Research, Translational Technology, Hidden Symptoms, Living Well with Parkinson’s, Managing Medication and Question sessions. There was a feeling of optimism at the meeting which comes across in the talks. If you missed the meeting or any of the talks you can catch them again by clicking here. Then enter PAR-CON 2024 to access the recordings.

The success of PAR-CON 2024 has encouraged the organisers to plan for a repeat PAR-CON in 2025 and they are looking for volunteers to join the Par-Con 2025 Working Group. The group will play a crucial role in shaping the event, agenda and bringing people together in late 2025. The deadline for applications is  very soon ie Monday 20 January 2025 but, if you have missed this deadline and are interested in getting involved, it might still be worth contacting Emma Williams, Research Events & Engagement Manager, at ekwilliams@parkinsons.org.uk.

PARKINSON’S RESEARCH NEWS

Towards the end of 2024 I received two research newsletters. So as this PEMRIG Newsletter is due out shortly I am going to leave you the links to these two research newsletters so you can read them yourselves if interested.

One was the Rapsodi December 2024 newsletter which can be accessed at the following link

file:///C:/Users/marti/OneDrive/Desktop/RAPSODI%20Newsletter%202024.pdf

There is a lot to read in this newsletter with the latest study updates, new publications, ways to get involved, stories from participants. Most importantly it describes entry criteria for the big Ambroxol cough mixture trial due to start in 2025. Anyone interested in taking part in the Ambroxol trial is encouraged to enrol in ‘PD Frontline’, a remote study offering online genetic testing for people with Parkinson’s. This can be done now and will help with recruiting people to the ASPro-PD trial. Further information can be found at: pdfrontline.com/en/ambroxol.

The research paper for the earlier small clinical trial assessing the potential of Ambroxol as a treatment for PD and entitled ‘Ambroxol for the Treatment of Patients With Parkinson Disease With and Without Glucocerebrosidase (GBA) Gene Mutations: A Nonrandomized, Noncontrolled Trial’ can be accessed at this link.

So, what is glucocerebrosidase (GCase), how does it figure in Parkinson's disease pathogenesis and how can ambroxol, used as a cough medicine in Europe, slow Parkinson’s progression?

The Editor tries to explain: GCase is an enzyme which normally functions inside the low pH environment of lysosomes to break down a sugar-containing lipid called glucocerebroside. Lysosomes are small membrane-bounded packets of hydrolytic enzymes which degrade and recycle damaged and unwanted cell constituents and invading bacteria delivered by the autophagy-lysosome  pathway (ALP) which selects intracellular cytosolic components for degradation in lysosomes and is essential for cell health.

Most PwP show very reduced levels of GCase activity in their cells. In 10-15% of cases this is because mutations in the GBA1 gene that codes for GCase on DNA cause misfolding of the GCase protein when it is first synthesised at the endoplasmic reticulum. This misfolded GCase cannot get into lysosomes, and it accumulates on the cytosolic surface of the lysosome membrane blocking the ALP and causing aggregation of other proteins destined for degradation. The effect is to upset the whole autophagy pathway in a cell causing stress and ultimately cell death. One key protein caught up in this aggregation is alpha-synuclein found in Lewy bodies, a feature of many PwP.

Ambroxol is a drug used in Europe for the treatment of respiratory diseases associated with excessive mucus. It is often administered as an active ingredient in cough syrup. In 2014 it was reported that Ambroxol improves lysosomal biochemistry in GCase mutation-linked Parkinson disease cells. Treatment with Ambroxol increased GCase activity, restored lysosome function and  returned cells with GBA mutations to normal. Since then, many in vitro and in vivo studies have shown that Ambroxol increases GCase activity. The 2020 study above with PwP showed that Ambroxol could cross the blood-brain barrier, was well tolerated and very importantly CSF α-synuclein levels were increased (ie cellular levels of alpha-synuclein were decreased).

Ambroxol increases GCase activity by acting as what is known as a ‘chaperone’, ie it is a compound which helps mutant proteins, in this case GCase, fold in such a way that the mutant GCase becomes active again restoring the autophagy pathway. Ambroxol is turning out to be one of the most effective chaperones of GCase. To learn more of the background leading up to this new big trial of Ambroxol follow this link.

The other newsletter was from Parkinson’s UK and was the winter edition of the Patient and Public Involvement (PPI) newsletter. Read the newsletter here.

In this edition the research involvement team at Parkinson’s UK look back on 2024, share some successes, opportunities for further training and more! They hope you enjoy the newsletter! If you have any feedback or suggestions for future editions, or if you’d like to write a blog about your experiences of being involved in research, please email them at researchinvolvement@parkinsons.org.uk.

The content of this newsletter shows how you can get involved with Parkinson’s research by being a PPI volunteer. Helping researchers write the ‘Plain English summary’ of their project is really challenging and as you see one researcher found the help she received invaluable. If you aren’t already a PPI and want to be more involved in research, then sign up to join the PPI volunteers. There is also information in this PPI newsletter about new research projects which have been funded though not much description is given.

PARKINSON’S TRIALS NEEDING VOLUNTEERS TO TAKE PART PHYSICALLY AND/OR TO COMPLETE A QUESTIONNAIRE

1. Professor Stephen Jackson and his team at the University of Nottingham are researching wearable electronic devices to reduce tremor in Parkinson’s. As part of their PPI activities, they value your opinion on potential neuromodulation approaches they may be developing - brief summaries are provided for each of the relevant techniques. Click on this link to access and fill in the survey. All data given in the survey is completely anonymised.  

2. The Levodopa study

Consultant physician Dr Robert Skelly and Parkinson’s Nurse Lisa Brown at Derby Royal Hospital seek information for their LEVODOPA STUDY on how you have coped if you have swallowing problems and have suddenly had to go into hospital.

Dr Skelly says ‘Sometimes people with Parkinson's develop difficulties swallowing their food and/or their medication. If they have to be admitted to hospital in an emergency the doctors in the hospital may need to change the usual Parkinson's treatment to something else such as a patch or treatment through a tube in the nose. We want to investigate what we believe is a better way to help people with Parkinson’s who have swallowing problem when they are admitted to hospital unexpectedly.

We will be applying to Parkinson’s UK for a grant to find a new solution to this swallowing problem. We will need your help in developing this project but first we need to collect background information to hear about your experiences. So, please contact us if:

A, You or a relative has been admitted to hospital and has not been able to take their usual Parkinson's medications due to swallowing problems or being too unwell, and

B,. Your Parkinson's medication was changed to a rotigotine patch or given through a tube in your nose’.

If both A and B apply, please contact us by email at dhft.pd@nhs.net or by phone on this dedicated number 01332 783535. Pleae state you are contacting us about the "Levodopa Study". Leave your name and phone number or email address. Either Dr Skelly or Lisa Brown will get back to you as soon as possible.

3. Get it on time: Parkinson's medication management while in hospital

The researchers aim to determine whether missed or delayed medication while PwP are staying in hospital can lead to health problems and unnecessarily extended hospital stays. 

They need 350 people with Parkinson’s, who are taking Parkinson’s medication and who have recently had a hospital visit or have a visit planned in the near future

What’s involved? You will be asked to complete one survey per month for 6 months following a hospital visit. The surveys can be completed online or by post and will take 30-40 minutes to complete.

For more information, please read the participant information sheet.

If you are interested in taking part please register your interest by following this link.  The deadline for taking part in this research is 1 June 2025.

 If you'd like to take part by post or have any questions, please contact Chesney Craig by email at c.craig@mmu.ac.uk or phone at 0161 247 5538. 

4. The TOP HAT trial of a licensed drug to treat hallucinations in Parkinson’s

The aim of the trial is to discover whether the already licensed drug Ondansetron has a meaningful treatment effect on the hallucinations some people experience in Parkinson’s. Ondansetron is an already licensed low-cost drug, and the organisers hope that if the research shows significant outcomes, Ondansetron could be available for people with Parkinson's who experience hallucinations within the next few years.

The trial needs 306 people diagnosed with Parkinson's or Dementia with Lewy bodies who:

a, experience visual hallucinations at least once a week,

b, are not taking apomorphine or any anti-psychotic medication, and

c, have been taking a stable dose of Parkinson's medication for 28 days before starting the research

What is involved?

The first activity will involve a telephone call to discuss the research more fully, and to complete some questionnaires. This will be followed by a brief face-to-face visit to a local study centre (see below) to assess your Parkinson’s, take a blood sample, and monitor your heart rhythm.

If you are eligible to take part, you will either receive ondansetron or dummy medication tablets for 12 weeks, which will be shipped to you via a courier. The research team will maintain regular contact throughout to take assessments and let you know how much medication to take. This contact will be through telephone, video call, and face-to-face. 3 face-to-face visits are required, and for some research sites, home visits may be an option.

For more details, please read the Participant Information Sheet at this link or contact the TOP HAT team by email at o.zubko@ucl.ac.uk.

The nearest study centre in the East Midlands for anyone who wants to take part is at Sherwood Forest Hospitals NHS Foundation Trust, Kings Mill Hospital, Sutton In Ashfield, NG17 4JL The deadline for taking part in this research is 1 July 2026.

4. STEPS 2 - CAN ELECTRICAL STIMULATION IMPROVE WALKING?

Researchers from the Salisbury District Hospital and the University of Plymouth want to understand if a small electrical stimulation device can improve walking for people with Parkinson’s.

Functional Electrical Stimulation (FES) is a technique that applies small electrical impulses through self-adhesive pads. These pads are placed on the skin over nerves that supply muscles that cause the foot to lift. Early testing suggests this may help to retrain movement.

The researchers need to recruit 234 people with Parkinson’s who have difficulty walking due to Parkinson’s, can walk 50 metres with walking aids, and can stand from sitting without assistance from another person.

What is involved?

If you are eligible to take part, you will either receive the study treatment, FES, for 18 weeks or your usual care for 22 weeks. You will be asked to attend visits to your local research site which are at Salisbury, Leeds, Swansea, Birmingham, Bangor or Cumbria.

Those receiving the study treatment, will attend 10 visits and those receiving usual care will attend 6 visits. The length of these visits will vary between 1 and 2 hours during which you will take part in tests to measure your movement, Parkinson’s symptoms, and you will be asked to complete surveys. You will also be asked to complete a falls and exercise diary for the duration of the study. Travel expenses will be reimbursed.

Read the participant information sheet at participant information sheet for more information. Then contact the study team by email at steps2.penctu@plymouth.ac.uk.The deadline for taking part in this research is 31 August 2025  Unfortunately, those receiving Deep Brain Stimulation (DBS) or using other active medical implanted devices, such as a pacemaker, are unable to take part.

5. IMPROVING QUALITY OF LIFE WITH AN ONLINE MENTAL HEALTH GROUP PROGRAMME

Becca Hunsdon, a PhD researcher at the University of Reading, has developed a new online group mental health programme to support the wellbeing and quality of life of people with Parkinson’s (PwPs). The programme aims to provide tools to deal with unhelpful thoughts and feelings in a group setting. Beca now wants to test how effective the programme is for PwPs.

Becca needs: 50 PwPs who are experiencing anxiety or low mood who have a stable medication regime, with no changes anticipated in the next 12 weeks, who have not accessed psychotherapy such as CBT, counselling, or acceptance and commitment therapy in the past 12 months?

Unfortunately, those diagnosed with a mental health condition such as psychosis are unable to take part.

What’s involved: Taking part in a 60-minute online introduction with the researcher, Joining 6 online group therapy sessions with between 3 and 7 other participants. These sessions will last between 60 and 90 minutes, completing homework tasks between each session and surveys which will take 25 minutes to complete.

All sessions will take place over Microsoft Teams and support is available for those unfamiliar with the software. You may be asked to wait up to 8 weeks before the programme starts.

For more information, please read the participation information sheet or contact Becca Hunsdon at r.i.hunsdon@pgr.reading.ac.uk.

To express an interest in taking part please go to the researcher's website, or contact Becca Hunsdon at r.i.hunsdon@pgr.reading.ac.uk. The researcher will then be in contact to discuss your participation. The deadline for taking part in this research is 30 April 2025.

6. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears, or feels things that aren’t there. This can be very distressing for the person and their loved ones. Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College, London, The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre

For the East Midlands study centres are at the Royal Hallamshire Hospital in Sheffield, the Kingsway Hospital, Kingsway, in Derby or King’s Mill Hospital, near Sutton-in-Ashfield.

The deadline for taking part is March 1st, 2025.

For more information, read the participant information sheet.

For Sheffield contact Anna Emery or Alex Radford by email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net).

For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

For Sutton-in-Ashfield the contact is Sara Pisani, email: canpdp.trialoffice@kcl.ac.uk. Phone: 07936 545 178

If you have any questions, please contact the CAN-PDP Research Team by email at canpdp.trialoffice@kcl.ac.uk or call: 07936545178.

7. ANSWER A SURVEY ABOUT ADVANCED THERAPIES FOR PARKINSON’S

There are many health conditions, including Parkinson’s, which lack treatments to slow or stop their progression. In the search for treatments, research is looking at potential non-drug treatments using methods such as cell, gene and tissue therapies. These are known as advanced therapies or ATMPs.

Dr Cheney Drew and Dr Kali Barawi have designed a survey to ask a broad range of people about ATMPs and ATMP research. They would like to understand how they can design research studies (including clinical trials) to include a more diverse range of people. This will help make sure that any new treatments that are developed are effective for everyone that needs them.

They need PwP, as  well as partners, family members and carers to answer their survey Online, at this link or by post by March 25th 2025. The survey should only take about 20 minutes to complete and they are particularly keen to hear from people from diverse backgrounds.

If you have any questions or would like to receive a paper copy of the survey, please email Kali at BarawiK1@cardiff.ac.uk .

PARKINSON’S UK RESEARCH SUPPORT NETWORK

This site advertises other trials needing volunteers. So click on the Take Part Hub on the Parkinson’s UK website to find other research projects needing volunteers.

NEW GUIDE: EXERCISE, BRAIN HEALTH AND PARKINSON’S

Use the link below to access a downloadable new review of exercise and Parkinson’s by the Michael J Fox Foundation. Nordic walking is included so see the Nordic walking talk at PEMRIG’s September open meeting.  Use this link to access the MJFF site. 

Newsletter comments, queries, corrections, arguments, and submissions to the Editor (Martin Rumsby) at: martin69747@gmail.com. If you have any top tips for coping with your Parkinson’s, special diets, exercise regimes, etc., that you would like to share with us in this Newsletter, email the editor. Any mistakes in the details above are entirely due to the Editor.

Newsletter – August 2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this August 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of thirteen groups round the UK whose aim is to interest people with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

Past events from PEMRIG that you may have missed:

‘The microbiome-gut-brain axis and probiotics in Parkinson's' can be watched at: recording link. You can catch up with the online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’, at this link.

PEMRIG visited Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research and how this is automated. Here is a link to hear the visit again: recording link. A summary of the visit to her laboratory will appear on the PEMRIG website soon.

WHAT’S NEXT FROM PEMRIG?

13th Annual PEMRIG Research and Welfare Forum ‘LIVING WELL WITH PARKINSON’S’. Saturday, September 7th, ‘10.00am to 4.00pm.

This free Event which includes lunch and refreshments is organised by PEMRIG for the local Parkinson's community and is supported by Parkinson's UK.

· Location: Nottingham Trent University & Conference Centre, Lecture Room 2 Teaching and Learning Building, Clifton Campus, Nottingham, NG11 8NS. This venue is easily accessible from Junction 24 of the M1 and blue badge and normal parking is available on site.

· This event is now fully booked so thank you to everyone who has already registered to attend! If you are still keen to attend, click here by 29th August and add your details to our waiting list though we cannot guarantee additional spaces will become available. You can find details of this and other research events both online and in person on the Parkinson's UK website at: this link.

Programme:

10.00 - 10.30am - Registration and coffee/tea.

10.30 - 10.40am - Welcome by John Turner, PEMRIG Chair.

10.40 - 11.20am - Dr Lynne Barker, Associate Professor in Cognitive Neuroscience, Shefield Hallam University: ‘The gut microbiome and gut-brain axis in Parkinson's: what have we learned so far and possible ways to enhance wellbeing’.

11.20 - 11.40am - Refreshments break, networking and marketplace.

11.40 - 12.20pm - Dr Bhanu Ramaswamy OBE (Independent Physiotherapist)

‘Strength training and brain health’.

12.20 - 1.00pm - Chris Stanley (Retired PE teacher and British Nordic Walking Instructor) -We are Undefeatable: Living Well with Parkinson’s through Exercise’, and Sara Jane

McCracken (Parkinson's Specialist Nurse and British Nordic Walking Instructor) – ‘Results of a Nordic Walking survey into the impact, accessibility and diversity of Nordic Walking in People with Parkinson’s’. 1.00 - 2.00pm - Lunch break

2.00 - 2.40pm - Dr Simon Stott, Director of Research at Cure Parkinson's: Keynote address:

An Update on Parkinson’s Research in 2024 and beyond”.

2.40pm - 3.10pm - Helen Scarr (Hatha Yoga & Meditation Instructor): Seated yoga, breathwork and meditation session

3.10pm - 3.25 pm Final Q & A and closing remarks 3.25pm - 4.00 pm Extra time for networking, chatting, visiting information stands, and having refreshments before heading home.

A few minutes have been allowed for questions from the floor after each talk. Alternatively, submit your questions in advance to Peter Barrett at docpete920@gmail.com. We hope that speakers will be around all day so should be available to answer your questions during and at the end of the meeting. If you have any queries about this event, please contact the organiser, John Turner, by email at: Pemrig.uk@gmail.com

Acknowledgements

This event is subsidised by local branches and by Parkinson’s UK. PEMRIG is grateful for funding for this Forum from the Leicester and Nottingham branches of Parkinson's UK in addition to money given in memoriam from some special people from the Derby Branch who had an interest in research.

____________________________________________________________________________________

AUTUMN ONLINE RESEARCH SEMINAR - PEMRIG is in the process of organising an online visit to a major Pharmaceutical Company to hear about their Parkinson’s research. Details to follow.

____________________________________________________________

Recent talks about Parkinson’s.

‘Finding the energy: What goes wrong with mitochondria in Parkinson’s disease’ was the title of the latest talk and questions in the No Silver bullet 4PD series by Prof Sonia Gandhi of University College, London. You will find this very informative talk at: https://www.youtube.com/watch?v=DttWHq8ch9o.

‘What have I learned from speaking to 30 Parkinson's researchers.’

Michel Planquart, co-organiser of the No Silver Bullet 4PD series of YouTube talks, has recently recorded an interview with the above title. He makes some very thoughtful points such as that loneliness is a main predictor of the outcome of one’s Parkinson’s. He asks how many PwP have been told this by their consultants and have been advised to join a branch of

Parkinson’s UK for the company and support. Click on this link to hear Michel’s comments: https://youtu.be/iZVogrN1aHU.

‘Practical strategies for a happier life with Parkinson's’. This was the title of the very helpful and positive No Silver Bullet interview with Dr Michael Okun, Professor of Neurology and Director of the Norman Fixel Institute for Neurological Diseases at the University of Florida Health. If you missed it, you could hear it again at: https://www.youtube.com/watch?v=cdXPIU7KoO4.

PARKINSON’S RESEARCH NEWS

1. How many trials examining the clinical development of new drug-based therapies for Parkinson’s do you think were active on January 31st, 2024?

Would you guess 10, 25 or even as many as 50? Surely not when we know such trials are expensive to run. Amazingly, a report in the Journal of Parkinson’s Research, Volume 14 (2024) pages 899–912 reveals that 136 trials of drugs targeting different aspects of Parkinson’s were active on January 31st, 2024; this figure has apparently stayed about the same for the last five years. The authors noted that only 35 of the 136 were new trials registered since 31st January 2023. The remaining 101 were longer running trials. This report includes a Plain Language Summary for non-specialists and the easy way to find the report is to type DOI 10.3233/JPD-240272 into your browser.

The authors of the report have examined the ClinicalTrials.gov website to track the progress of Phase 1, 2 and 3 trials of drugs which aim to either improve the symptoms of Parkinson’s (symptomatic treatments) or slow or reverse disease progression (disease-modifying treatments). The authors remind us that in a Phase 1 trial the safety of a drug is tested, usually in healthy people while in Phase 2 trials both the safety and some aspects of the effectiveness (efficacy) of the drug are tested in a small group of people with Parkinson’s (PwP). Phase 3 trials assess the long-term safety and the effectiveness of a drug in a much larger group of PwP. The authors point out that because the causes of Parkinson’s in many people are not well understood many drugs need to be tested to discover which may be useful to improve symptoms or to slow or reverse progression. We are also reminded that testing a drug successfully through Phases 1 and 2 to a final Phase 3 trial is a very long process. 30% of the 136 active trials recorded are in Phase 1 while 58% are in Phase 2. Disappointingly, only 12% are at a Phase 3 level where information from the trial if successful might be used to give results to move the drug into the clinic. Of the 136 trials recorded, 56% were defined as targeting Parkinson’s symptoms (both motor and non-motor) while 44% were classed as disease modifying.

The report highlights the fact that the number of trials investigating drugs aiming to improve the non-motor symptoms of Parkinson’s has increased from previous years. This is also true for the number of drugs targeting inflammation which is now seen as a driver of Parkinson’s progression. To learn a bit more about inflammation in Parkinson’s there is a webinar at this link.

The authors of the report conclude that the development and testing of new drugs to improve both the symptomatic and the disease-modifying aspects of Parkinson’s remains very healthy with a wide variety of new drugs being developed and evaluated in Phase 1 and 2 trials.

However, they express disappointment that the number of Phase 3 trials especially of disease-modifying therapies is disappointingly low. Lack of a full understanding of the complexity of Parkinson’s biology is mentioned as a possible explanation. The authors also hope that the rapid introduction of a new trials technique whereby several compounds can be tested against a single placebo with a continuous measurement of results will allow for a quicker transition of compounds between Phases 1 to 3 leading to the faster testing of novel compounds. This is the ACT-PD project which you can learn more about on a Cure Parkinson’s YouTube video at this link.

PARKINSON’S TRIALS AND EVENTS NEEDING VOLUNTEERS

1. INVESTIGATING MITOCHONDRIA AS A FUTURE TARGET FOR PARKINSON’S THERAPIES.

Mitochondria are small oganelles that produce the energy needed for cells to function normally. When mitochondria don’t work properly, cells don’t get enough energy. This could be what causes nerve cells to die in Parkinson’s. Genes in our DNA determine the structure of the mitochondria in our cells. Tora Smulders-Srinivasan at Teesside University has been investigating how changes to these genes may affect the symptoms of Parkinson’s. The research is currently being conducted in fruit flies.

Tora is applying for a Parkinson’s UK project grant to investigate one of the gene changes that she has found improved symptoms of Parkinson’s in fruit flies. She aims to investigate this in more detail before going on to look at these genes in human cells. This research will improve our knowledge of how mitochondria may be involved in Parkinson’s and help us move towards better treatments. Before she applies, she would like to talk to people affected by Parkinson’s to understand their views on her research plans and to hear suggestions to improve her research.

What is involved? Tora needs several people with Parkinson’s, their carers, partners and friends to either

1, join her in a 1.5-hour long discussion group online by video call eg zoom, during the week beginning the 9th of September or the 16th of September, or

2, to answer some questions about the proposed research via email by September 23rd

To get involved please email Anne at researchinvolvement@parkinsons.org.uk. Include in your email, a) your connection with Parkinson’s, b) whether you would rather join a discussion group or answer some questions via email, and c) if you prefer to attend a discussion group, please indicate when you are available during the weeks of 9th and 16th September, and if there are specific times that would be better for you. Please express your interest by Monday, September 2nd.

2. COMPLETE A NEUROSURVEY TO HELP IMPROVE SERVICES.

Completing this Neurosurvey will help build up a picture of what care and support is like for people with neurological conditions in the UK and Republic of Ireland. The survey is conducted every 2 years by the Neurological Alliance. There are 4 Alliances across the UK that are made up of charities that support people living with neurological conditions like Parkinson's.

Everyone deserves access to the right care, treatment and support at the right time, no matter who you are or where you live. Too often we know this isn’t the case for people with Parkinson’s. If you have Parkinson’s or care for someone who does, please take the survey at this link.

Each year the Neurological Alliance uses the survey results to influence the government and NHS. You can see the campaign's progress in this video. We want people who provide support for someone with a neurological condition such as Parkinson’s to take part. It should take around 20 minutes to complete and is conducted by a third party. It is completely anonymous and secure. You can also complete this survey over the phone. Please get in touch with myneurosurvey@revealingreality.co.uk or on 020 7735 8040 (standard network rates apply) to request a phone call.

The survey is open until 15 November 2024.

Sharing your experiences helps build a picture of treatment, care and support for people affected by neurological conditions throughout the UK and the Republic of Ireland. This means the Neurological Alliance can understand more about the change that is needed and can take the necessary action to bring about improvements.

3. SHARE YOUR THOUGHTS ON THE ROLL-OUT OF FOSLEVODOPA-FOSCARBIDOPA, A NEW TREATMENT FOR ADVANCED PARKINSON’S

In November 2023 Foslevodopa-foscarbidopa was approved by NICE for treating advanced Parkinson's. To ask how this new treatment has been received and rolled out, Dr Eva Bunting and colleagues at King’s College Hospital, London have contacted organisations that care for people with Parkinson's to ask how this new treatment has been received.

Dr Bunting’s group would like to hear what people with Parkinson’s (PwP) think about the results of their survey. The group is particularly keen to understand which findings in their survey are most important to PwPs. The group have drafted recommendations and a care pathway for healthcare professionals to use in relation to this new treatment. Eva and her group would now like feedback on their draft recommendations and care pathway to ensure that they fit the needs of PwP.

PwP, their carers and friends are now needed to read the draft recommendations and care pathway proposal and to answer some questions. You will then join an online zoom discussion group during the second week in September to review the proposals. To join the discussion group email Anne at researchinvolvement@parkinsons.org.uk by August 20th. Include in your email, your connection to Parkinson’s. when you or your loved one were diagnosed with Parkinson’s, what county you live in and which of the following dates you are available

· Tuesday 3 September, 4-5pm

· Wednesday 4 September, 10-11am

· Thursday 5 September, 1-2p

4. Developing a talking therapy for people with Parkinson’s who experience anxiety. Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th, 2024.

5. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears, or feels things that aren’t there. This can be very distressing for the person and their loved ones. Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College, London, The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway, in Derby. See below for who to contact at these study centres. For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

New Guide: Exercise, Brain Health and Parkinson’s –

Use the link below to access a downloadable new review of exercise and Parkinson’s by the Michael J Fox Foundation. Nordic walking is included as being beneficial so it is appropriate that the September open meeting being organised by PEMRIG features two speakers discussing the benefits of Nordic walking. Use this link to access the MJFF site.

If you are interested in Parkinson’s research and would like to be put on PEMRIG’s mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.comPEMRIG

Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

Newsletter – August 2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this August 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of thirteen groups round the UK whose aim is to interest people with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

Past events from PEMRIG that you may have missed:

‘The microbiome-gut-brain axis and probiotics in Parkinson's' can be watched at: recording link. You can catch up with the online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’, at this link.

PEMRIG visited Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research and how this is automated. Here is a link to hear the visit again: recording link. A summary of the visit to her laboratory will appear on the PEMRIG website soon.

WHAT’S NEXT FROM PEMRIG?

13th Annual PEMRIG Research and Welfare Forum ‘LIVING WELL WITH PARKINSON’S’. Saturday, September 7th, ‘10.00am to 4.00pm.

This free Event which includes lunch and refreshments is organised by PEMRIG for the local Parkinson's community and is supported by Parkinson's UK.

· Location: Nottingham Trent University & Conference Centre, Lecture Room 2 Teaching and Learning Building, Clifton Campus, Nottingham, NG11 8NS. This venue is easily accessible from Junction 24 of the M1 and blue badge and normal parking is available on site.

· This event is now fully booked so thank you to everyone who has already registered to attend! If you are still keen to attend, click here by 29th August and add your details to our waiting list though we cannot guarantee additional spaces will become available. You can find details of this and other research events both online and in person on the Parkinson's UK website at: this link.

Programme:

10.00 - 10.30am - Registration and coffee/tea.

10.30 - 10.40am - Welcome by John Turner, PEMRIG Chair.

10.40 - 11.20am - Dr Lynne Barker, Associate Professor in Cognitive Neuroscience, Shefield Hallam University: ‘The gut microbiome and gut-brain axis in Parkinson's: what have we learned so far and possible ways to enhance wellbeing’.

11.20 - 11.40am - Refreshments break, networking and marketplace.

11.40 - 12.20pm - Dr Bhanu Ramaswamy OBE (Independent Physiotherapist)

‘Strength training and brain health’.

12.20 - 1.00pm - Chris Stanley (Retired PE teacher and British Nordic Walking Instructor) -We are Undefeatable: Living Well with Parkinson’s through Exercise’, and Sara Jane

McCracken (Parkinson's Specialist Nurse and British Nordic Walking Instructor) – ‘Results of a Nordic Walking survey into the impact, accessibility and diversity of Nordic Walking in People with Parkinson’s’. 1.00 - 2.00pm - Lunch break

2.00 - 2.40pm - Dr Simon Stott, Director of Research at Cure Parkinson's: Keynote address:

An Update on Parkinson’s Research in 2024 and beyond”.

2.40pm - 3.10pm - Helen Scarr (Hatha Yoga & Meditation Instructor): Seated yoga, breathwork and meditation session

3.10pm - 3.25 pm Final Q & A and closing remarks 3.25pm - 4.00 pm Extra time for networking, chatting, visiting information stands, and having refreshments before heading home.

A few minutes have been allowed for questions from the floor after each talk. Alternatively, submit your questions in advance to Peter Barrett at docpete920@gmail.com. We hope that speakers will be around all day so should be available to answer your questions during and at the end of the meeting. If you have any queries about this event, please contact the organiser, John Turner, by email at: Pemrig.uk@gmail.com

Acknowledgements

This event is subsidised by local branches and by Parkinson’s UK. PEMRIG is grateful for funding for this Forum from the Leicester and Nottingham branches of Parkinson's UK in addition to money given in memoriam from some special people from the Derby Branch who had an interest in research.

____________________________________________________________________________________

AUTUMN ONLINE RESEARCH SEMINAR - PEMRIG is in the process of organising an online visit to a major Pharmaceutical Company to hear about their Parkinson’s research. Details to follow.

____________________________________________________________

Recent talks about Parkinson’s.

‘Finding the energy: What goes wrong with mitochondria in Parkinson’s disease’ was the title of the latest talk and questions in the No Silver bullet 4PD series by Prof Sonia Gandhi of University College, London. You will find this very informative talk at: https://www.youtube.com/watch?v=DttWHq8ch9o.

‘What have I learned from speaking to 30 Parkinson's researchers.’

Michel Planquart, co-organiser of the No Silver Bullet 4PD series of YouTube talks, has recently recorded an interview with the above title. He makes some very thoughtful points such as that loneliness is a main predictor of the outcome of one’s Parkinson’s. He asks how many PwP have been told this by their consultants and have been advised to join a branch of

Parkinson’s UK for the company and support. Click on this link to hear Michel’s comments: https://youtu.be/iZVogrN1aHU.

‘Practical strategies for a happier life with Parkinson's’. This was the title of the very helpful and positive No Silver Bullet interview with Dr Michael Okun, Professor of Neurology and Director of the Norman Fixel Institute for Neurological Diseases at the University of Florida Health. If you missed it, you could hear it again at: https://www.youtube.com/watch?v=cdXPIU7KoO4.

PARKINSON’S RESEARCH NEWS

1. How many trials examining the clinical development of new drug-based therapies for Parkinson’s do you think were active on January 31st, 2024?

Would you guess 10, 25 or even as many as 50? Surely not when we know such trials are expensive to run. Amazingly, a report in the Journal of Parkinson’s Research, Volume 14 (2024) pages 899–912 reveals that 136 trials of drugs targeting different aspects of Parkinson’s were active on January 31st, 2024; this figure has apparently stayed about the same for the last five years. The authors noted that only 35 of the 136 were new trials registered since 31st January 2023. The remaining 101 were longer running trials. This report includes a Plain Language Summary for non-specialists and the easy way to find the report is to type DOI 10.3233/JPD-240272 into your browser.

The authors of the report have examined the ClinicalTrials.gov website to track the progress of Phase 1, 2 and 3 trials of drugs which aim to either improve the symptoms of Parkinson’s (symptomatic treatments) or slow or reverse disease progression (disease-modifying treatments). The authors remind us that in a Phase 1 trial the safety of a drug is tested, usually in healthy people while in Phase 2 trials both the safety and some aspects of the effectiveness (efficacy) of the drug are tested in a small group of people with Parkinson’s (PwP). Phase 3 trials assess the long-term safety and the effectiveness of a drug in a much larger group of PwP. The authors point out that because the causes of Parkinson’s in many people are not well understood many drugs need to be tested to discover which may be useful to improve symptoms or to slow or reverse progression. We are also reminded that testing a drug successfully through Phases 1 and 2 to a final Phase 3 trial is a very long process. 30% of the 136 active trials recorded are in Phase 1 while 58% are in Phase 2. Disappointingly, only 12% are at a Phase 3 level where information from the trial if successful might be used to give results to move the drug into the clinic. Of the 136 trials recorded, 56% were defined as targeting Parkinson’s symptoms (both motor and non-motor) while 44% were classed as disease modifying.

The report highlights the fact that the number of trials investigating drugs aiming to improve the non-motor symptoms of Parkinson’s has increased from previous years. This is also true for the number of drugs targeting inflammation which is now seen as a driver of Parkinson’s progression. To learn a bit more about inflammation in Parkinson’s there is a webinar at this link.

The authors of the report conclude that the development and testing of new drugs to improve both the symptomatic and the disease-modifying aspects of Parkinson’s remains very healthy with a wide variety of new drugs being developed and evaluated in Phase 1 and 2 trials.

However, they express disappointment that the number of Phase 3 trials especially of disease-modifying therapies is disappointingly low. Lack of a full understanding of the complexity of Parkinson’s biology is mentioned as a possible explanation. The authors also hope that the rapid introduction of a new trials technique whereby several compounds can be tested against a single placebo with a continuous measurement of results will allow for a quicker transition of compounds between Phases 1 to 3 leading to the faster testing of novel compounds. This is the ACT-PD project which you can learn more about on a Cure Parkinson’s YouTube video at this link.

PARKINSON’S TRIALS AND EVENTS NEEDING VOLUNTEERS

1. INVESTIGATING MITOCHONDRIA AS A FUTURE TARGET FOR PARKINSON’S THERAPIES.

Mitochondria are small oganelles that produce the energy needed for cells to function normally. When mitochondria don’t work properly, cells don’t get enough energy. This could be what causes nerve cells to die in Parkinson’s. Genes in our DNA determine the structure of the mitochondria in our cells. Tora Smulders-Srinivasan at Teesside University has been investigating how changes to these genes may affect the symptoms of Parkinson’s. The research is currently being conducted in fruit flies.

Tora is applying for a Parkinson’s UK project grant to investigate one of the gene changes that she has found improved symptoms of Parkinson’s in fruit flies. She aims to investigate this in more detail before going on to look at these genes in human cells. This research will improve our knowledge of how mitochondria may be involved in Parkinson’s and help us move towards better treatments. Before she applies, she would like to talk to people affected by Parkinson’s to understand their views on her research plans and to hear suggestions to improve her research.

What is involved? Tora needs several people with Parkinson’s, their carers, partners and friends to either

1, join her in a 1.5-hour long discussion group online by video call eg zoom, during the week beginning the 9th of September or the 16th of September, or

2, to answer some questions about the proposed research via email by September 23rd

To get involved please email Anne at researchinvolvement@parkinsons.org.uk. Include in your email, a) your connection with Parkinson’s, b) whether you would rather join a discussion group or answer some questions via email, and c) if you prefer to attend a discussion group, please indicate when you are available during the weeks of 9th and 16th September, and if there are specific times that would be better for you. Please express your interest by Monday, September 2nd.

2. COMPLETE A NEUROSURVEY TO HELP IMPROVE SERVICES.

Completing this Neurosurvey will help build up a picture of what care and support is like for people with neurological conditions in the UK and Republic of Ireland. The survey is conducted every 2 years by the Neurological Alliance. There are 4 Alliances across the UK that are made up of charities that support people living with neurological conditions like Parkinson's.

Everyone deserves access to the right care, treatment and support at the right time, no matter who you are or where you live. Too often we know this isn’t the case for people with Parkinson’s. If you have Parkinson’s or care for someone who does, please take the survey at this link.

Each year the Neurological Alliance uses the survey results to influence the government and NHS. You can see the campaign's progress in this video. We want people who provide support for someone with a neurological condition such as Parkinson’s to take part. It should take around 20 minutes to complete and is conducted by a third party. It is completely anonymous and secure. You can also complete this survey over the phone. Please get in touch with myneurosurvey@revealingreality.co.uk or on 020 7735 8040 (standard network rates apply) to request a phone call.

The survey is open until 15 November 2024.

Sharing your experiences helps build a picture of treatment, care and support for people affected by neurological conditions throughout the UK and the Republic of Ireland. This means the Neurological Alliance can understand more about the change that is needed and can take the necessary action to bring about improvements.

3. SHARE YOUR THOUGHTS ON THE ROLL-OUT OF FOSLEVODOPA-FOSCARBIDOPA, A NEW TREATMENT FOR ADVANCED PARKINSON’S

In November 2023 Foslevodopa-foscarbidopa was approved by NICE for treating advanced Parkinson's. To ask how this new treatment has been received and rolled out, Dr Eva Bunting and colleagues at King’s College Hospital, London have contacted organisations that care for people with Parkinson's to ask how this new treatment has been received.

Dr Bunting’s group would like to hear what people with Parkinson’s (PwP) think about the results of their survey. The group is particularly keen to understand which findings in their survey are most important to PwPs. The group have drafted recommendations and a care pathway for healthcare professionals to use in relation to this new treatment. Eva and her group would now like feedback on their draft recommendations and care pathway to ensure that they fit the needs of PwP.

PwP, their carers and friends are now needed to read the draft recommendations and care pathway proposal and to answer some questions. You will then join an online zoom discussion group during the second week in September to review the proposals. To join the discussion group email Anne at researchinvolvement@parkinsons.org.uk by August 20th. Include in your email, your connection to Parkinson’s. when you or your loved one were diagnosed with Parkinson’s, what county you live in and which of the following dates you are available

· Tuesday 3 September, 4-5pm

· Wednesday 4 September, 10-11am

· Thursday 5 September, 1-2p

4. Developing a talking therapy for people with Parkinson’s who experience anxiety. Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th, 2024.

5. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears, or feels things that aren’t there. This can be very distressing for the person and their loved ones. Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College, London, The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway, in Derby. See below for who to contact at these study centres. For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

New Guide: Exercise, Brain Health and Parkinson’s –

Use the link below to access a downloadable new review of exercise and Parkinson’s by the Michael J Fox Foundation. Nordic walking is included as being beneficial so it is appropriate that the September open meeting being organised by PEMRIG features two speakers discussing the benefits of Nordic walking. Use this link to access the MJFF site.

If you are interested in Parkinson’s research and would like to be put on PEMRIG’s mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.comPEMRIG

Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

Newsletter – July 2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this July 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of thirteen groups round the UK whose aim is to interest people with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

Past events from PEMRIG that you may have missed:

‘The microbiome-gut-brain axis and probiotics in Parkinson's' can be watched at: recording link. You can catch up with the online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’, at this link.

PEMRIG visited Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research and how this is automated. Here is a link to hear the visit again: recording link.  A summary of the visit to her laboratory will appear on the PEMRIG website soon.

WHAT’S NEXT FROM PEMRIG?

13th Annual PEMRIG Research and Welfare Forum ‘LIVING WELL WITH PARKINSON’S’. Saturday, September 7th, ‘10.00am to 4.00pm.

Please join PEMRIG at our 13th Research and Welfare Forum. This free Event which includes lunch and refreshments is organised by PEMRIG for the local Parkinson's community and is supported by Parkinson's UK.

Location: Nottingham Trent University & Conference Centre, Clifton Campus, Nottingham, NG11 8NS. This venue is easily accessible from Junction 24 of the M1 and there is plenty of parking on site.

Click the following link to register and a ticket will be sent to your email address: https://www.eventbrite.co.uk

The programme is as follows:

10.00 - 10.30am - Registration and coffee/tea.

10.30 - 10.40am -  Welcome by John Turner, PEMRIG Chair.

10.40 - 11.20am - Dr Lynne Barker, Associate Professor in Cognitive Neuroscience, Shefield Hallam University: ‘The gut microbiome and gut-brain axis in Parkinson's: what have we learned so far and possible ways to enhance wellbeing’.

11.20 - 11.40am - Refreshments break, networking and marketplace.

11.40 - 12.20pm - Dr Bhanu Ramaswamy OBE (Independent Physiotherapist)

‘Strength training and brain health’.

12.20 - 1.00pm - Chris Stanley (Retired PE teacher and British Nordic Walking Instructor) -We are Undefeatable: Living Well with Parkinson’s through Exercise’, and Sara Jane

McCracken (Parkinson's Specialist Nurse and British Nordic Walking Instructor) -  ‘Results of a Nordic Walking survey into the impact, accessibility and diversity of Nordic Walking in People with Parkinson’s’.

1.00 - 2.00pm - Lunch break

2.00 - 2.40pm - Dr Simon Stott, Director of Research at Cure Parkinson's: Keynote address: Summary of the latest Parkinson’s drug trials and results.

2.40pm - 3.10pm - Helen Scarr (Hatha Yoga & Meditation Instructor): Seated yoga, breathwork and meditation session

3.10pm - 3.25 pm Closing Remarks and final Q & A
3.25pm - 4.00 pm Forum Closes, with extra networking time for chatting, visiting information stands, and having some refreshments before heading home.

A few minutes have been allowed for questions from the floor after each talk. Alternatively, submit your questions in advance to Peter Barrett at docpete920@gmail.com. Speakers will be around all day so should be available to answer your questions at the end of the meeting. If you have any queries about this event, please contact the organiser, John Turner, by email at: Pemrig.uk@gmail.com

Acknowledgements

This event is subsidised by local branches and by Parkinson’s UK. PEMRIG is grateful for funding for this Forum from the Leicester and Nottingham branches of Parkinson's UK, as well as money given in memoriam from some special people from the Derby Branch who had an interest in research.

____________________________________________________________________________________

AUTUMN ONLINE RESEARCH SEMINAR - PEMRIG is in the process of organising an online visit to a major Pharmaceutical Company to hear about their Parkinson’s research. Details to follow.

______________________________________________________

Recent talks about Parkinson’s.

Did you miss the recent No Silver Bullet talk entitled ‘Why I am optimistic that we might now have a Silver Bullet for PD’, by Dr Jonathan Sackner-Bernstein MD and the very long Q & A session? If you want to hear it try this link.

A recent No Silver Bullet interview with Dr Michael Okun entitled ‘Practical strategies for a happier life with Parkinson's’ was very helpful and positive.  If you missed it, you can hear it again at this link.

PARKINSON’S RESEARCH NEWS

The Type 2 diabetes drug Lixisenatide gives positive results in the large LixiPark Phase 2 trial part-funded by Cure Parkinson’s.

The results of a one-year, Phase 2 clinical trial of the Type 2 diabetes drug Lixisenatide show that it may slow the progression of motor/movement symptoms in Parkinson’s. Those participants receiving the Lixisenatide treatment showed a slowing down in the progression of their motor symptoms compared with those on the placebo drug whose mobility continued to decline. The effect of Lixisenatide on motor function continued even after treatment with the drug had stopped.

These new results with Lixisenatide are exciting because they back up what was found recently in smaller trials with Exenatide, another Type 2 diabetes drug which works in the same way as Lixisenatide. A large Phase 3 trial of Exenatide is now in progress in the UK. Both Lixisenatide and Exenatide are what are known as GLP-1 receptor agonists and are clinically approved for the treatment of diabetes so much is already known about the safety features of these drugs for their use in humans. Importantly, they have demonstrated beneficial actions in the brain making them an area of interest for Parkinson’s. Use this link to read more about how Lixisenatide and Exenatide work in the body: https://cureparkinsons.org.uk/2024/04/phase-2-trial-results-of-lixisenatide-published/

The nerve cell-replacement trial STEM-PD is proceeding to the next stage based on positive safety data.

Parkinson’s is characterised by the loss of dopamine-producing nerve cells (neurones) in the brain leading to problems with movement and other effects. Therefore, a nerve cell transplantation technique is being tested as a potential treatment for replacing the dopamine-producing nerve cells that are lost in Parkinson’s. STEM-PD is the ongoing clinical trial that is measuring the safety and tolerance of this nerve cell-replacement technique.

The transplanted dopamine-producing neurons are produced from stem cells which by manipulating their culture conditions can be directed to grow into dopaminergic neurones ready for transplantation. This joint trial is taking place in Sweden where four Parkinson’s patients have already received the new nerve cells and the good news is that all four people are doing well with no side effects of major concern. This positive result has led the STEM-PD team to select another four patients who will receive a larger number of the replacement nerve cells. The first of these four new patients has already received the higher dose of transplanted nerve cells. Though the main point of the trial is to establish that the technique is safe, the STEM-PD team, led by Professor Roger Barker of Cambridge (UK) and Professor Gesine Paul-Visse at Lund in Sweden will now start examining whether the transplanted cells produce clinical benefits along with how well they survive. Read more about this work at this link.

LITHIUM and PARKINSON’S

Yes, you read it correctly. Lithium, discovered in the 1960’s as a simple and inexpensive drug for combatting mood disorders, is now to be evaluated in a small Phase 1b clinical trial to study whether it could be repurposed to slow Parkinson’s progression. Cure Parkinson’s and the Van Andel Institute are funding the recruitment of a small number of Parkinson’s patients onto a clinical trial led by Professor Guttuso at the University of Buffalo in the USA.

Lithium therapy has been shown to be beneficial in several animal models of Parkinson’s and Professor Guttuso has hypothesised that the reduced risk of smokers developing Parkinson’s as known from many cohort studies may be due to the high levels of lithium found in tobacco. Lithium has several neuroprotective effects which could be important in slowing Parkinson’s progression such as reducing inflammation and oxidative stress, as well as improving mitochondrial function, known to be impaired in Parkinson’s. A small pilot study by Professor Guttuso in 2019 to explore the potential effect of lithium in people with Parkinson’s gave sufficiently promising results that low-dose lithium therapy has been prioritised for another trial. The paper describing this earlier study can be found at this link.

The researchers in this trial obviously cannot make invasive measurements on the brains of the trialists to follow if lithium is having an effect on progression. So, they will follow how lithium affects the levels of two well defined biomarkers of Parkinson’s progression which are less invasive to measure. The biomarkers are a nuclear protein known as Nurr1 where levels of this protein in white blood cells correlate with Parkinson’s progression and the ‘free water’ in specific areas of the brain which can be measured non-invasively by MRI and which increases as nerve cells die. More information about Nurr1 and ‘free water’ in this lithium trial can be found in a recent edition of the Cure Parkinson’s newsletter at this link.

PARKINSON’S TRIALS AND EVENTS NEEDING VOLUNTEERS

1. Exploring experiences of mouth care in people with Parkinson’s.

Researchers from the University of Sheffield want to find out what people with Parkinson’s do to keep their mouth, teeth and dentures healthy. They also want to know if having Parkinson’s has affected this and if there has been a change over time. The researchers need 15 people with Parkinson’s and 15 carers. Taking part will involve having an interview with a researcher online, by phone or attending in person if you are near Sheffield. You will be reimbursed with a £15 voucher for taking part.

Contact Jessie Tebbutt by MOB: 07703179151 or email   Jessie.tebbutt@sheffield.ac.uk if you are interested in helping. The deadline for taking part is August 1st, 2024. Read the participant information sheet at this link.

2. Developing a talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th, 2024.
  

3. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears, or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College, London,
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres. For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

New Guide: Exercise, Brain Health and Parkinson’s –

Use the link below to access a downloadable new review of exercise and Parkinson’s by the Michael J Fox Foundation. Nordic walking is included as being beneficial so it is appropriate that the September open meeting being organised by PEMRIG features two speakers discussing the benefits of Nordic walking. Use this link to access the MJFF site:  https://www.michaeljfox.org/news/new-guide-exercise-brain-health-and-parkinsons

If you are interested in Parkinson’s research and would like to be put on PEMRIG’s mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.comPEMRIG

Newsletter comments, queries and submissions to the Editor at  martin69747@gmail.com

Newsletter – May 2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this May 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest people with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

Past events from PEMRIG that you may have missed:

‘The microbiome-gut-brain axis and probiotics in Parkinson's' can be watched at: recording link. You can catch up with the online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’, at this link. PEMRIG visited Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research and how this is automated. Here is a link to hear the visit again: recording link.

WHAT’S NEXT FROM PEMRIG?

The 13th Annual PEMRIG Research and Welfare meeting ‘CONTINUING TO LIVE WELL WITH PARKINSON’S’. September 7th 10.00am to 4.00pm.

This is an all day Face to Face meeting with free lunch and refreshments. The keynote speaker, Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust, will give a round up of current research and trials. Other speakers at the meeting include Dr Lynne Barker (gut-brain-microbiome axis, Sheffield Hallam), Dr Bhanu Ramaswamy (Strength training and brain health, Hallamshire Physiotherapy Ltd), Chris Stanley and Sarah McCracken (Nordic Walking for Parkinson’s) and Helen Scarr (Yoga for Parkinson’s).

The full programme will appear in the June Newsletter with a link so you can register to attend.

This meeting is being held at the Conference Centre of Nottingham Trent University on the Clifton Campus, Nottingham NG11 8NS which is readily accessible from Junction 24 of the M1. PEMRIG greatly appreciates the input of Emma Parkinson and her team from Parkinson’s UK for helping us organise this event.

_______________________________________________________________________________

Upcoming Parkinson’s talks and discussions

Wednesday, May 5th 5.00pm – 6.00pm. A Cure Parkinson’s webinar on ‘Inflammation and Parkinson’s – understanding its role and recent advances in research’

The Cure Parkinson’s team are inviting you to hear a panel of experts including Professor Malú Tansey (University of Florida), Dr Kirsten Scott and Cure Parkinson’s trustee Alison Anderson discuss inflammation and its role in Parkinson’s. Recent advances in clinical trials within this field of research will also be discussed. Register for this webinar by going to the Cure Parkinson’s website at this link.

Inflammation is a hot topic in Parkinson’s research at the moment with a trial of azathioprine going on in Cambridge and Parkinson’s UK partnering with a US company to help develop a potential new drug to target inflammation in the brain areas affected by Parkinson’s. The Parkinson's Virtual Biotech programme is providing £2.1million to this 2-year project, which if successful, could see the drug move towards testing in people in clinical trials.

For more information on inflammation in Parkinson’s use this link.

Saturday, May 11th, 10.30am-1.30pm. An online meeting on ‘Medications for Parkinson’s: Current, new and in development.’ Join SERIG, the South East Research Interest Group, at their online Spring Research Conference to hear Helen Groves, Shelley Jones, Dr Kevin McFarthing and Professor Camille Carroll discuss why we need dopamine, the evolution and future of drug treatments for Parkinson’s, and the potential of drug repurposing to find new treatments. The registration page can be found at this link.

Next No Silver Bullet talk - Monday 13th May at 7.00pm - ‘Practical strategies for living a happier life with Parkinson's’. The speaker, Dr Michael Okun, is a worldwide leader on Parkinson’s disease. He is a Professor of Neurology and Director of the Norman Fixel Institute for Neurological Diseases at the University of Florida Health. Register for this talk at this link.

If you missed the last No Silver bullet talk by Dr Michelle Sexton on ‘How can medical cannabis help people with Parkinson's’ you can listen to it via this link: https://www.youtube.com/watch?v=SyPwBlCrHzM

PARKINSON’S TRIALS NEEDING VOLUNTEERS….!

1. Exploring experiences of mouth care in people with Parkinson’s.

Researchers from the University of Sheffield want to find out what people with Parkinson’s do to keep their mouth, teeth and dentures healthy. They also want to know if having Parkinson’s has affected this and if there has been a change over time. The researchers need 15 people with Parkinson’s and 15 carers. Taking part will involve having an interview with a researcher online, by phone or attending in person if you are near Sheffield. You will be reimbursed with a £15 voucher for taking part.

Contact Jessie Tebbutt by MOB: 07703179151 or email   Jessie.tebbutt@sheffield.ac.uk if you are interested in helping. The deadline for taking part is August 1st 2024. Read the participant information sheet at this link.

2. Developing a talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th, 2024.
  

3. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2-month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

4. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears, or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.]For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial at this link.

New Guide: Exercise, Brain Health and Parkinson’s –

Use the link below to access a downloadable new review of exercise and Parkinson’s by the Michael J Fox Foundation. Nordic walking is included as being beneficial so it is appropriate that the September open meeting being organised by PEMRIG features two speakers discussing the benefits of Nordic walking. Use this link to access the MJFF site:  https://www.michaeljfox.org/news/new-guide-exercise-brain-health-and-parkinsons

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

Newsletter – APRIL  2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this April 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

Past events from PEMRIG that you may have missed:

‘The microbiome-gut-brain axis and probiotics in Parkinson's' can be watched at: recording link. You can catch up with the online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’, at this link. PEMRIG visited Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research and how this is automated. Here is a link to hear the visit again: recording link.

WHAT’S NEXT FROM PEMRIG?

The online visit in May to MSD Pharma: Drug Discovery in Neuroscience to hear about their Parkinson’s research is postponed until the autumn.

13th Annual PEMRIG Research and Welfare meeting ‘CONTINUING TO LIVE WELL WITH PARKINSON’S’. September 7th 10.00am, to 4.00pm

This is an all day Face to Face meeting with free lunch and refreshments. The keynote speaker, Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust, will give a round up of current research and trials. Other speakers at the meeting will include Dr Lynne Barker (gut-brain-microbiome axis, Sheffield Hallam), Dr Bhanu Ramaswamy (Strength training and brain health, Hallamshire Physiotherapy Ltd), Chris Stanley and Sarah McCracken (Nordic Walking for Parkinson’s) and Helen Scarr (Yoga for Parkinson’s). The full programme for this event will be given in the May or June newsletter.

This event will be held at the Conference Centre of Nottingham Trent University, on the Clifton Campus, Nottingham NG11 8NS which is readily accessible from Junction 24 of the M1. PEMRIG greatly appreciates the input of Emma Parkinson and her team from Parkinson’s UK for helping us with this event.

The link to register for this 13th PEMRIG Face to Face meeting will be available soon-so put this date in your diary now to reserve the day!

Next ‘No Silver Bullet ‘lecture – Monday 22nd April from 7.30 to 9.30pm

‘How can medical cannabis help people with Parkinson’s’?

Dr Michelle Sexton is an integrative medicine specialist and respected pioneer in the field of medical cannabis. She has over thirty years of experience as a herbalist and naturopathic doctor. Her NIH-funded pre-doctoral and postdoctoral research investigated cannabis use in patients with Multiple Sclerosis and its impact on inflammatory markers. She practices medicine in California. Register for this event at this link.

RESEARCH NEWS  

The latest eletter from Cure Parkinson’s (https://cureparkinsons.org.uk) reports the good news that a Phase 2 clinical trial of lixisenatide has shown positive results, indicating that this Type 2 diabetes drug has the potential to slow the progression of motor symptoms in Parkinson’s. This result matches similar findings with exenatide, another type 2 diabetes drug which has also been found to slows motor symptom progression. The eletter gives some detail of how these drugs work. A bigger Phase 3 exenatide trial is currently in progress in the UK and should report its findings in late 2024.

PARKINSON’S TRIALS NEEDING VOLUNTEERS….!

1. Exploring experiences of mouth care in people with Parkinson’s.

Researchers from the University of Sheffield want to find out what people with Parkinson’s do to keep their mouth, teeth and dentures healthy. They also want to know if having Parkinson’s has affected this and if there has been a change over time. The researchers need 15 people with Parkinson’s and 15 carers. Taking part will involve having an interview with a researcher online, by phone or attending in person if you are near Sheffield. You will be reimbursed with a £15 voucher for talking part.

Contact Jessie Tebbutt by MOB: 07703179151 or email   Jessie.tebbutt@sheffield.ac.uk if you are interested in helping. The deadline for taking part is August 1st 2024. Read the participant information sheet at this link.

2. Developing a talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th 2024.
  

3. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

4. CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.]For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial, at this link.

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

PEMRIG

PARKINSON’S EAST MIDLANDS RESEARCH INTEREST GROUP

Newsletter – MARCH  2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and others reading this March 2024 PEMRIG newsletter. Please consult the PEMRIG website (https://pemrig.org.uk) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

If you missed PEMRIG’s very successful 2023 online research meeting on ‘The microbiome-gut-brain axis and probiotics in Parkinson's' you can listen to it here: recording link.

WHAT’S NEXT FROM PEMRIG?

April 3rd 11.00am - 1.00pm. Online visit to Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research work.

Register for this lab visit at this link.

My Parkinson’s research is centralised on the idea of finding ways to support dopamine neurons and to prevent their loss. While much research is focused on dopamine neurons themselves, it is important to note that they do not exist alone in the human brain and receive and require many signals and molecules for support and function from other cell types, most importantly astrocytes. Therefore, the focus of my research is on understanding whether dopamine neuron loss in Parkinson’s is due to a lack of support by astrocytes and to find ways in which we can boost this support to promote dopamine neuron survival.

Modelling the complexity of the human brain for Parkinson’s research is difficult. However, a recent technology allows us to take skin cells from Parkinson’s patients and reprogramme these skin cells into induced pluripotent stem cells (iPSCs). These iPSCs can be turned into any cell type in the body and we have developed protocols to produce iPSC-derived dopamine neurons and astrocytes for research. My work uses these iPSC-derived dopamine neurons and astrocytes to study communication between these two cell types, as well as astrocyte support of dopamine neurons in Parkinson’s.

Additionally, my work involves developing drug therapy avenues to boost either astrocyte support of dopamine neurons or dopamine neuron function in Parkinson’s.

Book this date – May 13th 2 - 4pm. Why? Because PEMRIG have an online visit via Microsoft Teams to MSD Pharma: Drug Discovery in Neuroscience to hear about their Parkinson’s research. More information to come in the April newsletter.

September 7th:10.00am to 4.00pm 13th Annual PEMRIG Research and Welfare meeting ‘CONTINUING TO LIVE WELL WITH PARKINSON’S’.

This is an all day Face to Face meeting (10.00am – 4.00pm) with free lunch and refreshments. The keynote speaker, Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust, will give a round up of current research and trials.

Dr Lynne Barker (Sheffield Hallam) and Dr Bhanu Ramaswamy (Hallamshire Physiotherapy Ltd) have also agreed to talk at this meeting.

This event will be held at the Conference Centre of Nottingham Trent University, on the Clifton Campus, Nottingham NG11 8NS which is readily accessible from Junction 24 of the M1. PEMRIG greatly appreciates the input of Katie Smith and her team from Parkinson’s UK for helping us with this event.

The booking link for this meeting will be available in the March and subsequent PEMRIG Newsletters.

March 11th online meeting ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’. If you missed the two talks in this meeting, you can listen to a recording at this link.

CURE PARKINSON’S – sign up for their March e-newsletter at   https://cureparkinsons.org.uk/newsletter/. 

Then, read about The Movers & Shakers ‘Parky Charter’ petition. Please sign the petition to swell the numbers.

Also, note the latest Cure Parkinson’s spring research round-up to be held on April 17th from 1.30pm to 6.00pm. You can book a virtual place at this meeting to hear from their funded researchers about updates from the upcoming Montelukast trial and the Lixipark study results. 

PARKINSON’S TRIALS NEEDING VOLUNTEERS….!

1. Developing a talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals. If you have questions contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513. The deadline for taking part in this research is September 30th 2024.
  

2. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.]For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial, at this link.

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

April 3rd 11.00am - 1.00pm. Online zoom visit to Dr Charmaine Lang’s laboratory in Oxford to hear about her Parkinson’s research work.

Register for this lab visit at this link.

Dr Lang describes her research work: Parkinson’s research is centralised on the idea of finding ways to support dopamine neurons and to prevent their loss. While much research is focused on dopamine neurons themselves, it is important to note that they do not exist alone in the human brain and receive and require many signals and molecules for support and function from other cell types, most importantly astrocytes. Therefore, the focus of my research is on understanding whether dopamine neuron loss in Parkinson’s is due to a lack of support by astrocytes and to find ways in which we can boost this support to promote dopamine neuron survival.

Modelling the complexity of the human brain for Parkinson’s research is difficult. However, a recent technology allows us to take skin cells from Parkinson’s patients and reprogramme these skin cells into induced pluripotent stem cells (iPSCs). These iPSCs can be turned into any cell type in the body and we have developed protocols to produce iPSC-derived dopamine neurons and astrocytes for research. My work uses these iPSC-derived dopamine neurons and astrocytes to study communication between these two cell types, as well as astrocyte support of dopamine neurons in Parkinson’s.

Additionally, my work involves developing drug therapy avenues to boost either astrocyte support of dopamine neurons or dopamine neuron function in Parkinson’s.

September 7th:10.00am to 4.00pm 13th Annual PEMRIG Research and Welfare meeting ‘CONTINUING TO LIVE WELL WITH PARKINSON’S’.

This is an all day Face to Face meeting (10.00am – 4.00pm) with free lunch and refreshments. The keynote speaker, Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust, will give a round up of current research and trials.

Dr Lynne Barker (Sheffield Hallam) and Dr Bhanu Ramaswamy (Hallamshire Physiotherapy Ltd) have also agreed to talk at this meeting.

This event will be held at the Conference Centre of Nottingham Trent University, on the Clifton Campus, Nottingham NG11 8NS which is readily accessible from Junction 24 of the M1. PEMRIG greatly appreciates the input of Katie Smith and her team from Parkinson’s UK for helping us with this event.

The booking link for this meeting will be available in the March and subsequent PEMRIG Newsletters.

PARKINSON’S TALKS, RESEARCH AND TRIALS

Developing a device to monitor symptoms of Parkinson’s at home.

A new opportunity to help with research has recently been announced by Parkinson’s UK. Researchers at the University of Wolverhampton are developing a device to monitor movement symptoms of Parkinson’s at home. They are organising workshops for people with Parkinson’s, their caregivers, and healthcare professionals to help develop the device. They need up to 20 people with Parkinson’s, or who care for someone with Parkinson’s or are a healthcare professional working with people with Parkinson’s. You must have access to a laptop and the internet if taking part online.

What is involved?

You will be asked to take part in a workshop either online by Microsoft Teams or in person in the West Midlands. The workshop will last for 2 hours including breaks and will include discussions about the device and participants’ experiences. The Workshops will be video recorded and support is available for those unfamiliar with this software. 

For more information, please read the participant information sheet  or
contact Tina Smith by email at tina.smith@wlv.ac.uk if you have any questions 

The deadline for taking part in this research is 29 February 2024.

Developing talking therapy for people with Parkinson’s who experience anxiety.  Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s. For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals

If you have questions about participating in this study contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513.
The deadline for taking part in this research is September 30th 2024.
  

Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.

You will either receive the study treatment (CBD) or a placebo treatment (such as a sugar pill) for 12 weeks. You will be asked to attend up to 6 visits either over the telephone, online, or at your local research centre or your home. Each visit will last between 1 and 3 hours. During the visits, you may be asked to give blood samples, complete surveys, or physical examinations. Your expenses will be reimbursed for your participation in this research.
  

For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial, at this link.

Parkinson’s: diet and the gut vs the brain

Cure Parkinson’s held a very interesting webinar earlier this month on this very important topic. If you missed this discussion a recording of the webinar available to watch again can be found at this link.   

There were so many questions that Cure Parkinson’s is putting these together with replies from the panellists in a separate FAQ folder to be issued shortly. Watch out for a link to these questions in the next PEMRIG Newssheet.

To keep up to date with all future webinars from Cure Parkinson’s along with their latest research and fundraising news, sign up to their newsletter here: https://cureparkinsons.org.uk/newsletter/. 

THE ROLE OF FOCUSSED ULTRASOUND IN THE MANAGEMENT OF PARKINSON’S

Dr Raul Martinez- Fernandez gave a fascinating presentation in the latest No Silver Bullet series. His talk provoked a very informative and positive Q&A which is well worth listening to at: this link.

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

PEMRIG

PARKINSON’S EAST MIDLANDS RESEARCH INTEREST GROUP

Newsletter – JANUARY  2024

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and anyone else reading this first newsletter of 2024. Please consult the PEMRIG website (click here) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on in the UK and all round the world.

If you missed PEMRIG’s very successful 2023 online research meeting on ‘The microbiome-gut-brain axis and probiotics in Parkinson's' you can listen to it here: recording link.

WHAT’S NEXT FROM PEMRIG?

March: an evening online talk-Title: ‘Navigating Parkinson's: Update, Imaging, and Digital Tools’. (Date and time to be finalised)

Summary: Embark on a journey with "Navigating Parkinson's," a special presentation crafted for patients and their families. Gain an update on advancements in Parkinson's research and potential breakthroughs in treatment options or disease management. Explore the world of advanced imaging techniques, helping us visualize and track changes of the brain in Parkinson's. Plus, discover the latest in digital tools designed to monitor and enhance the well-being of those affected by PD. Join us for an informative and supportive session, where we navigate through the complexities of Parkinson's together.

May/June/July: Online[M1] [M2]  visits to one or possibly two laboratories to hear first-hand about their Parkinson’s research. (Dates are being finalised).

September 7th: All day Face to Face meeting (10.00am – 4.00pm) with lunch and refreshments on ‘Living well with Parkinson’s’ to include a research round-up by keynote speaker Dr Simon Stott, Director of Research at the Cure Parkinson’s Trust.

We are currently looking for a suitable venue in the Nottingham area. In view of the success of PEMRIG’s last Face to Face meeting it could be worth booking this date in your diaries right now. PEMRIG greatly appreciates the input of Katie Smith and her team from Parkinson’s UK for helping us with this event

HOT NEWS – PEMRIG is involved in local research at Nottingham University to develop a wearable wrist device to reduce Parkinson’s tremor

PEMRIG congratulates Professor Stephen Jackson and his colleagues at Nottingham University on the award of a grant from Parkinson’s UK to research the development of a wearable wrist device to reduce Parkinson’s tremor by electrical stimulation of the median nerve. Two members of PEMRIG are collaborators on the grant and will assist in experimental design and with help in recruiting local volunteers with Parkinson’s for testing and trials.

Professor Jackson writes:

We have demonstrated that delivering rhythmic electrical stimulation to the median nerve at the wrist can be used very effectively to substantially reduce the severity and frequency of unwanted movements and vocalisations (known as tics) in individuals with Tourette syndrome. We have successfully worked with a medical device company to design a prototype ‘watch-like’ therapeutic device that can be used outside the clinic to deliver median nerve stimulation on demand, and thereby to reduce vocal and motor tics.

We have been contacted by very many individuals with Parkinson’s to ask if this approach might be effective in treating their tremor symptoms. Tremor is one of the main motor symptoms of Parkinson’s and occurs in approximately 75% of individuals. Tremor in Parkinson’s has a unique pathophysiology compared to other motor symptoms (e.g., bradykinesia and rigidity) and has a variable response to medication. For this reason, neuromodulation using stimulation of the median nerve at the wrist could offer an attractive, non-drug, treatment for the improvement of Parkinson’s tremor. We know that Parkinson’s tremor can be temporarily suppressed by delivering non-invasive brain stimulation to the cortical sensorimotor area. The award of this grant will allow us to determine whether sequences of median nerve stimuli that target the cortical sensorimotor area in the brain will effectively suppress PD tremor symptoms, and if so, whether this approach could be incorporated into a wearable therapeutic wrist device that can be used outside the clinic.

PARKINSON’S TALKS, RESEARCH AND TRIALS

Dr Simon Stott - Parkinson’s trials roundup.

If you want an overview of the important Parkinson’s trials of 2023 and what to look out for in 2024 go to the No Silver Bullet website and find the latest talk. This was given by Dr Simon Stott, Head of Research at the Cure Parkinson’s Trust, on Monday January 15th. Dr Stott’s talk will give you some encouragement that many new drugs to treat different aspects of Parkinson ‘s are being investigated even though it will be some years before they reach the clinic for use.

Click this link to access the website.

PARKINSON’S TRIALS SEEKING PARTICIPANTS

Two opportunities to help with research have recently been announced by Parkinson’s UK. These trials focus on the mental wellbeing of people with Parkinson’s about coping with negative emotions. 

1. Developing talking therapy for people with Parkinson’s who experience anxiety

Researchers from University College London want to develop Acceptance and Commitment Therapy (ACT) that is tailored specifically for people with Parkinson’s. ACT is a form of talking therapy that helps people to learn new ways of dealing with distressing thoughts, feelings and bodily sensations. This therapy has been found to be helpful for improving wellbeing in other neurological conditions such as epilepsy.

The researchers need 15 people with Parkinson’s who experience anxiety and 15 health professionals working with people affected by Parkinson’s.

You will take part in a 1 hour interview by phone or on a video call in which the researchers will ask for your thoughts on what may help or hinder people with Parkinson’s taking part in talking therapy and what Acceptance and Commitment Therapy could look like for people with Parkinson’s. 

For more information read either the participant information sheet for people with Parkinson’s or the participant information sheet for health professionals

If you have questions about participating in this study contact Natasha Lyons by email at Natasha.lyons.18@ucl.ac.uk or Suzanne Reeves by phone on 07947-036-513.
The deadline for taking part in this research is September 30th 2024.
  

2. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people with Parkinson’s to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker. You will take part in a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training. 

If you are interested in participating then contact Caroline Seton by email at c.seton@pgr.reading.ac.uk or phone her on 07367-301-282.The closing date for taking part is 4 June 2024. 

In addition, the CAN-PDP trial is still recruiting to investigate:

CAN CBD (CANNABIDIOL) REDUCE SYMPTOMS OF HALLUCINATIONS AND DELUSIONS IN PEOPLE WITH PARKINSON’S

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend visits with them to a local study centre which for our region means the Royal Hallamshire Hospital in Sheffield or at Kingsway Hospital, Kingsway,
in Derby. See below for who to contact at these study centres.

You will either receive the study treatment (CBD) or a placebo treatment (such as a sugar pill) for 12 weeks. You will be asked to attend up to 6 visits either over the telephone, online, or at your local research centre or your home. Each visit will last between 1 and 3 hours. During the visits, you may be asked to give blood samples, complete surveys, or physical examinations. Your expenses will be reimbursed for your participation in this research.
  

For more information, please read the participant information sheet. For Sheffield contact Anna Emery or Alex Radford by Email at anna.emery@nhs.net or Alex Radford alex.radford2@nhs.net). For Derby the contact is Caroline Cheetham. Email: caroline.cheetham@nhs.net

The ‘take part’ hub on the Parkinson’s UK website gives details of this trial, at this link.

Sign up for the Cure Parkinson’s Trust e-newsletter.

The January edition of the Cure Parkinson’s Trust e-newsletter has just appeared in my in-box. One section describes preliminary results of a clinical trial conducted in France which was co-funded by the Cure Parkinson’s Trust. The study involved 156 people with Parkinson’s, who were either treated with the Type 2 diabetes drug lixisenatide or a placebo ‘dummy’ drug, for 12 months. The initial results have demonstrated that lixisenatide significantly slowed the progression of motor symptoms in people with Parkinson’s over the year’s trial. People with Parkinson’s on the placebo continued to experience progression of their symptoms.

Lixisenatide belongs to a class of drugs called GLP-1R agonists, and is very similar to another drug that Cure Parkinson’s has been investigating for Parkinson’s called exenatide.

There are several other interesting facts about drug trials and Parkinson’s in this e-newsletter. You can sign up to get on the mailing list at this link: https://cureparkinsons.org.uk/your-permissions/

MOVERS AND SHAKERS PODCASTS – Rory Cellan-Jones, Gillian Lacey-Solymar, Mark Mardell, Paul Mayhew-Archer, Sir Nicholas Mostyn, and Jeremy Paxman discuss the realities of life with Parkinson's at this link.

If you are interested in Parkinson’s research and would like to be put on our mailing list, please contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor (Martin Rumsby) at martin69747@gmail.com

          PEMRIG

PARKINSON’S EAST MIDLANDS RESEARCH INTEREST GROUP

                           Newsletter – DECEMBER 2023

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and anyone else reading this December newsletter. Please consult the PEMRIG website (click here) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on at the moment.

WHAT’S NEXT FROM PEMRIG?

If you missed PEMRIG’s very successful online research meeting on ‘The microbiome-gut-brain axis and probiotics in Parkinson's' you can listen to it here: recording link

PEMRIG is currently planning its 2024 programme. So if you have suggestions for forum topics for online and/or Face-to-Face meetings please email your ideas to PEMRIG’s Chair John Turner at Pemrig.uk@gmail.com

MORE ON DIET AND PARKINSON’S

If you are interested in diet and Parkinson’s you won’t want to miss the next talk in the No Silver Bullet series to be held at 7.30pm on December 11th when Professor Bas Bloem will be discussing 

‘The importance of nutrition in managing Parkinson's".

There is a growing focus on nutrition in relation to proper care for Parkinson's disease. Professor Bloem will explain how a well-balanced diet can enhance symptom management and maximise the benefits of medication. He will also provide helpful advice on ensuring adequate nutrition. Professor Bas Bloem is consultant neurologist at the Department of Neurology, Radboud University Medical Centre, The Netherlands. He is one of the world’s top Parkinson’s specialists.

To listen to this talk you need to register in advance at this link.

Three websites that deal with diet and nutrition in Parkinson's are at:

https://www.parkinsons.org.uk/information-and-support/diet: 

https://medium.com/parkinsons-uk/supplements-and-parkinsons-81c0310f2c16 and

https://www.parkinsons.org.uk/research/research-blog/ask-expert/whats-gut-got-do-parkinsons

The next CURE PARKINSON’S WEBINAR is on December 6th, 5.00pm to 6.00pm. The title is:

‘Stem cells for Parkinson’s – the latest updates’

Professor Kunath will be joined by: Associate Professor Agnete Kirkeby from the University of Copenhagen who is involved with the STEM-PD study, Dr Cheney Drew of Cardiff University who has been working on patient experience in clinical trials, and patient research advocate Rachel Gibson

Register for this webinar by going on the Cure Parkinson’s website at this link.

This is a really hot topic with stem cell trials in progress and being planned. The results of a Phase 1 clinical trial were announced by pharmaceutical company Bayer AG and BlueRock Therapeutics LP at the International Congress of Parkinson's Disease and Movement Disorders in Copenhagen, Denmark.

In the trial, 12 people with Parkinson’s underwent surgery to receive either a high or low dose of dopamine-producing cells developed from stem cells. The results showed that the treatment was well tolerated with no major safety issues. And after 12 months, participants experienced improvement in their Parkinson’s symptoms, with those who received the higher dose showing greater improvement.

A Phase 2 study to investigate this promising therapy further is now being planned with recruitment expected to begin in 2024. To read more go to the Parkinson’s UK website at this link.

PARKINSON’S TRIALS AND RESEARCH NEWS

1. Can brain training affect how people with Parkinson’s feel and think?

Researchers at the University of Reading want to understand whether brain training can improve how information is stored and processed in the brain in people with Parkinson’s, and whether this can help people to better manage their emotions.

They need 100 people with Parkinson’s who have access to a computer and a speaker.

You will complete a pre-training assessment before completing either 10 brain training sessions, or 10 placebo training sessions over a two-week period. Each training session will last approximately 20 minutes. You will also be asked to complete two follow-up assessments, at 1 month and 2 month intervals after the training 

Read the participant information sheet for more information

If you are interested in taking part read the information sheet and then
contact Caroline Seton by email c.seton@pgr.reading.ac.uk or phone 07367 301 282.
The closing date for taking part is 4 June 2024. 

2. Evaluating a digital app that supports the mental health of people with Parkinson’s

Researchers at City University want your thoughts on a new digital app developed to support the mental health of people with Parkinson’s. They want to find out if the app helps to improve mental wellbeing and hear your opinion on how it could be improved to best support you.

The researchers need 60 people with Parkinson’s who have a need for mental health support and who can access the internet at home, such as with a phone or computer.

For more details: read the participant information sheet at this underlined link or contact Cathryn Pinto by email at  Cathryn.pinto@city.ac.uk or phone on 02070 404 041 for more information. The deadline for joining this trial is February 1st 2024.

3. Can cannabidiol (CBD) reduce symptoms of hallucinations and delusions in people with Parkinson’s?

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend study visits with them.

You will either receive the study treatment (CBD) or a placebo treatment (such as a sugar pill) for 12 weeks. You will be asked to attend up to 6 visits either over the telephone, online, or at your local research centre or your home. Each visit will last between 1 and 3 hours. During the visits, you may be asked to give blood samples, complete surveys, or physical examinations. Your expenses will be reimbursed for your participation in this research.
  

For more information, please read the participant information sheet.

HOT TOPICS FROM THE WORLD PARKINSON’S CONGRESS – July 4-7th 2023 in Barcelona. Every three years the whole Parkinson’s community gets together for the World Parkinson’s Congress. This year the congress was held in Barcelona between 4–7 July. Parkinson’s UK have put together a blog which brings you some of the research highlights. Read the blog at this link.

If you are interested in Parkinson’s research and would be interested in joining our committee or want to be put on our membership list, contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

PEMRIG Newsletter comments, queries and submissions to the Editor at martin69747@gmail.com

  PEMRIG

PARKINSON’S EAST MIDLANDS RESEARCH INTEREST GROUP

                           Newsletter – NOVEMBER 2023

Hello to all East Midlands’ people with Parkinson’s, carers, families, health professionals and anyone else reading this November edition of the PEMRIG newsletter. Please consult the PEMRIG website  (click here) for details of past laboratory visits and research seminars. PEMRIG is one of twelve groups round the UK whose aim is to interest People with Parkinson’s and their carers in the exciting Parkinson’s research going on at the moment.

If you are interested in joining our committee or want to be put on our membership list, contact John Turner, PEMRIG’s Chair, by mobile at 07989747733 or email at: pemrig.uk@gmail.com

WHAT’S NEXT FROM PEMRIG?

12th PEMRIG Annual Research Meeting

Saturday 28th October 2023 10.30-12.30pm

    ‘The microbiome-gut-brain axis and probiotics in Parkinson's' 

You might still be in time to register for this research meeting at: this registration link

CURE PARKINSON’S NOVEMBER 1st RESEARCH UPDATE MEETING AT 2.00pm

The Cure Parkinson’s Research Update Meetings bring you the most up to date news on the research they are funding. The theme of this meeting is ‘Repurposing and repositioning drugs for Parkinson’s’ and the main speaker is Professor Oliver Bandmann, Professor of Movement Disorders Neurology and Honorary Consultant Neurologist at the University of Sheffield.

His talk is about ‘UDCA: the discovery and assessment of this promising drug for Parkinson’s’.

AGENDA

2.00 pm   Welcome and opening remarks - Helen Matthews (CEO)

2.05 pm   Professor Oliver Bandmann - UDCA followed by a Q&A session

3.00 pm   Break

3.30 pm   Georgia Mills, Research Project Manager, UCL – The EJS-ACT-PD multi-arm, multi-stage clinical trials platform followed by discussion

4.00 pm   Cure Parkinson’s research update – Dr Simon Stott, Director of Research

4.30 pm   Q&A session

5.00pm    close

To attend this meeting on line, use this link to go to the Cure Parkinson’s site to register.

Professor Bandmann’s talk is about UDCA (ursodeoxycholic acid), a drug used to treat a type of liver disease. But some research has shown that UDCA can also boost energy production by mitochondria in brain cells. Mitochondria are the batteries of cells making the energy needed to drive all cellular processes. There is evidence that in Parkinson’s mitochondria are not producing enough energy to support the function of certain brain cells which then die. By improving the function of mitochondria, brain cells may be able to survive longer.

       An early clinical trial with UDCA in 31 people conducted in Sheffield has shown that the drug UDCA is safe to take, that it improved mitochondrial activity in brain cells and the improved energy production by brain mitochondria might have effect on gait. A much larger trial which runs for a longer period is now needed to assess whether UCDA can slow Parkinson’s progression. 

         This use of an established drug to treat a new condition is known as ‘repurposing’ and the advantages are that the earlier work has shown that the drug is safe to use in humans. 

PARKINSON’S RESEARCH NEWS AND TRIALS

LIXISENATIDE - Preliminary results from the LixiPark study, a 1 year, Phase 2 clinical trial, show that this Type 2 diabetes drug gives positive results on slowing the progression of motor or movement symptoms in Parkinson’s. A full results analysis is expected to be published in early 2024.

This is another exciting example of a drug already in use being repurposed for trials in Parkinson’s. Cure Parkinson’s is involved in this trial and full details about the lixisenatide preliminary results are available at this link.

1. Evaluating a digital app that supports the mental health of people with Parkinson’s

Researchers at City University want your thoughts on a new digital app developed to support the mental health of people with Parkinson’s. They want to find out if the app helps to improve mental wellbeing and hear your opinion on how it could be improved to best support you.

The researchers need 60 people with Parkinson’s who have a need for mental health support and who can access the internet at home, such as with a phone or computer.

For more information about what is involved please read the participant information sheet. 

Contact Cathryn Pinto by email at  Cathryn.pinto@city.ac.uk or phone on 02070 404 041 for more information. The deadline for joining this trial is February 1st 2024.

2. Can cannabidiol (CBD) reduce symptoms of hallucinations and delusions in people with Parkinson’s?

Around 3 in 4 people with Parkinson’s will experience symptoms of hallucinations or delusions. Hallucinations can mean that the person sees, hears or feels things that aren’t there. This can be very distressing for the person and their loved ones.
Current treatments for hallucinations and delusions are not very effective, or come with unwanted side effects. That’s why, in 2019, Parkinson’s UK announced funding for CAN-PDP, an innovative clinical trial working with King’s College London,.
The trial aims to understand whether cannabidiol (CBD) may be useful for treating these hallucination and delusion symptoms in Parkinson’s. CBD has been shown to have positive effects on other brain conditions such as epilepsy.

This trial needs 120 people with Parkinson’s who are over 40 years old, who have experienced any symptoms of hallucinations or delusions for at least one month, have been taking any Parkinson’s medications for at least one month, are not taking clozapine and have someone who can attend study visits with them.

You will either receive the study treatment (CBD) or a placebo treatment (such as a sugar pill) for 12 weeks. You will be asked to attend up to 6 visits either over the telephone, online, or at your local research centre or your home. Each visit will last between 1 and 3 hours. During the visits, you may be asked to give blood samples, complete surveys, or physical examinations. Your expenses will be reimbursed for your participation in this research.
  

For more information, please read the participant information sheet.

3. The PALOMA Study -  a chance to help with Parkinson’s research

This is a low risk observational study with no medicines to take. The Paloma study is testing new software that measures eye movement to see if it can detect Parkinson’s progression more quickly than current clinical assessments. This trial has been approved by Cure Parkinson’s and by Parkinson’s UK. The study needs volunteers who are

1, aged between 40 to 85 years old, and

2, are within 5 years of their initial Parkinson’s diagnosis.

The study clinics for the trial are in Castle Donington Derbyshire and Little Baldon Oxfordshire so it is more relevant to people with Parkinson’s in the Leicestershire, Derbyshire, and Oxfordshire  areas though if you are prepared to travel to the study clinics you may be suitable as out of pocket expenses will be reimbursed.  Paloma will also pay you £200 for taking part if you complete all study visits. 

To learn more about the PALOMA TRIAL and to find out if you are eligible phone Paloma on 01332 429760 or email: paloma@thevctc.com

HOT TOPICS FROM THE WORLD PARKINSON’S CONGRESS – July 4-7th 2023 in Barcelona

Every three years the whole Parkinson’s community gets together for the World Parkinson’s Congress. This year the congress was held in Barcelona between 4–7 July. Parkinson’s UK have put together a blog which brings you some of the research highlights. Read the blog at https://medium.com/parkinsons-uk/highlights-from-the-world-parkinson-congress-hot-topics-710accb60476

PEMRIG Newsletter comments, queries and submissions to the Editor at martin69747@gmail.com