People powering Parkinson’s research

The Research Support Network is a community which brings together people driven to help find a cure and better treatments for Parkinson’s. Since its launch in 2010, the Network has been designed and shaped in collaboration with volunteers. Today, we are working with over 480 volunteers who are essential to driving forward Parkinson’s research.

Research volunteers bring their experience, skills and passion to the Network. They ensure the Parkinson’s community can get connected with, take part and have their say in Parkinson’s research. There are a number of roles available, from helping Parkinson’s UK decide what research to fund, to sharing research news with your community.

Our volunteers share their motivations

Research Champions play a vital role in their local area by connecting people affected by Parkinson's to news about Parkinson’s research. Lynda has been a Research Champion since 2023.

Lynda shared: “During my life I've suffered from difficulties due to being diagnosed with autism and ADHD. But when I was diagnosed with Parkinson’s, I was more positive. I thought, well what can I do?

“So hopefully, what I’ve learnt from my autism and ADHD will help me with Parkinson’s, and maybe I can help others too.”

As a Research Champion, Lynda shares research news, events and opportunities to shape, influence and take part in research with her community. She does this by sharing our research newsletter and research leaflets at her GP surgery and local pharmacy, ensuring that more people affected by Parkinson's are connected to, and part of, every breakthrough.

Lynda shared: “I'm interested to find out how Parkinson’s affects you and how to help yourself and others with the disease. I want to help others and spread the word, which hopefully will aid others with their problems.

“I haven't found any problems taking part in research. It just takes a few minutes of your time and hopefully this will benefit others with Parkinson's and maybe help with finding a cure.”

Find out more about being a Research Champion.

Patient and Public Involvement contributors

People affected by Parkinson’s are experts in what it’s like to live with the condition. So it's really important that research is shaped by the Parkinson's community at every step. Patient and public involvement (PPI) contributors work alongside researchers to ensure research is relevant and meaningful to those affected by the condition.

Shah became a PPI contributor in 2018.

He shared: “I felt quite lost to be honest, after I was diagnosed. I couldn’t believe it and I wanted to know what was going to happen to me. I kept asking the GP and neurologist ‘how long do I have before I get disabled?’ That was the thought that frightened me.

“But later on I got involved with the Parkinson’s community and saw people who have been diagnosed for 10 years, 20 years, even longer. I was reassured that it’s not all that bad. I set an aim to help as much as I can to find a cure for Parkinson’s, not only for myself but for future generations.

“I was afraid that being a PPI contributor would consume too much of my time and be a big commitment and feeling of responsibility. But then after I joined I found that there is absolutely no pressure whatsoever. 

“A project I’ve been involved with recently is to do with an app to help control anxiety and self-care. At the end, I had an interview with the researchers, who asked me what I thought of the app and how it could be improved. So I could help develop the app, in that respect. As I was interested in psychology myself, I enjoyed it very much.

“The most important [thing I get] is a feeling of self-satisfaction. Just knowing that I am involved and doing something. I know that my voice has been heard. I’m also getting to know other people and they share their knowledge with me.”

Stephen was diagnosed with Parkinson’s 8 years ago. He volunteered to be a PPI contributor in 2023.

Stephen shared: “I've had 2 opportunities so far, both of which I really enjoyed. They both involved helping research teams to prepare literature for participants in their research projects.

“I'm not a Parkinson’s scientist, but still I was able to have an impact on the formulation of the literature and their questionnaires for people with Parkinson's. This drew on my experience with Parkinson's itself, which was possibly the most important thing.

“In both cases the teams that I helped were extremely appreciative and I felt that I was making a contribution. I get a sense of satisfaction that I am doing my bit, however small that might be, to fight this debilitating disease.”

Find out more about being a PPI contributor.

Progress magazine

Progress is Parkinson’s UK research magazine. It’s published every summer and provides a deeper insight into some of the ongoing Parkinson’s research across the UK and beyond.

Nicky joined the Progress editorial board in 2022.

She shared: “My journey with Parkinson’s began just before the first COVID-19 lockdown. Despite being surrounded by a hugely supportive family, at the beginning it was incredibly lonely. Almost a year after my diagnosis, I was still trying to come to terms with the situation.

“So I Googled ‘Parkinson’s’, literally for the first time, and it came up with Parkinson’s UK. I then did loads of exploring of the website. I started looking at research and I thought, ‘I want to help make a difference and I want to learn more’.

“My role on the Progress editorial board is using my personal experiences of Parkinson’s to help other members. We help to develop the magazine and decide what to put in it. I love the fact that everybody listens to our views, because everybody is so different. Everyone's diagnosis, symptoms or experience varies, it works really well. I think that’s the value. 

“The first highlight was having my name in the magazine as part of the editorial team. My children were like ‘wow look’! It was a very proud moment.

“For me, being a research volunteer is a perfect way to make the most of the diagnosis. There are going to be some people who won't feel as positive. I certainly wasn’t as positive at the beginning as I am now, But I feel more confident to be positive because of what I found and what I gained from Parkinson’s UK.”

Lay grant reviewer

Each year, Parkinson’s UK awards around £8m in funding for research projects. Lay grant  reviewers make a huge impact by influencing research funding decisions.

Ellen joined as a lay grant reviewer in 2022.

She shared: “I was diagnosed back in November 2021. Parkinson’s has opened up a world for me, offering a positive side to what might otherwise be seen as all negative.

“I wanted to learn about the underlying causes of the diverse ways Parkinson’s plays out in different people. I volunteer for any studies I can, from completing surveys to trying out devices to having MRIs and other tests to track what’s going on in my brain.

“I especially relish being a lay reviewer for research proposals. I can contribute to the science in funding proposals and add value through voicing what I think is useful and attractive to others with Parkinson’s, and bring common sense about what might work.

“Our testimonies really make a difference in helping Parkinson’s UK decide what research to fund. It is fascinating and greatly rewarding.”

Find out more about becoming a lay grant reviewer.

Want to join us?

Anyone can be a research volunteer. You don’t need to have taken part in research or have a scientific background. Everyone has experiences, perspectives and knowledge that are valuable and important to make Parkinson’s research the best it can be.

While many roles are for people with Parkinson’s and carers, we also have roles for members of the public, researchers and healthcare professionals.

We particularly welcome research volunteers from minority ethnic backgrounds to support us in building connections and awareness with communities who are underrepresented in research. This is one of our goals as part of our Race Equality in Research project.

You can hear about volunteering roles like those mentioned in this blog through our Research Support Network. It’s free to join and a great way to stay connected. You can sign up today on our website.