At Cure Parkinson’s, the volunteers who are part of our advocacy community play a crucial role in helping support our mission – from shaping research priorities, to sharing their experiences to help raise awareness about living with Parkinson’s.
We’d love for you to join us and become part of our community – here are some of the ways you can get involved:
Become an Advocate
Help raise awareness about Parkinson’s and inspire others by sharing your personal experiences of living with the condition. By telling your story, you’ll help more people understand Parkinson’s and encourage support for our work.
Become a Research Advocate
As a Research Advocate, you’ll play a key role in shaping the clinical trials funded by Cure Parkinson’s. By sharing your experience, you can help make sure trials are designed and run with participants’ needs in mind.
Become a Research Advocate Council member
As a member of the Research Advocate Council, you’ll help shape the future of Parkinson’s research and advocacy by sharing your experiences and insights. Together, we’ll inspire others to get involved, improve the way research is shared, and advocate for patient-focused policies that drive progress toward better treatments and a cure.
Become an Ambassador
As an Ambassador, you’ll play a vital role in representing Cure Parkinson’s, sharing our mission, and raising awareness about the urgent need for research into better treatments and a cure for Parkinson’s. You’ll inspire others to support our work and join our journey toward a world without Parkinson’s.
Taking part in research – Katy’s story
“I thought: ‘I need to do something’. Participating in a drug trial struck me as the most useful.” Katy, was officially diagnosed with Parkinson’s at age 42. Inspired to do something useful with her diagnosis, she enrolled in a clinical trial for a “repurposed drug, well-tolerated with a good safety record. It gave me a sense of purpose.”
“These days, my symptoms are more rapidly progressing,” she says. “It’s frightening – and brings into sharp focus the immediate need for disease-modifying treatments.”
Katy has now volunteered to be part of the Patient & Public Inclusion & Engagement (PPIE) Working Group for the upcoming EJS ACT-PD trial – an initiative that is focused on setting up a multi-arm, multi-stage (MAMS) platform evaluating new therapies for Parkinson’s. Her advice for others thinking about getting involved in clinical trials? “Don’t commit expecting to benefit.” she explains. “It’s human nature to hope you’ll strike gold. But if you benefit, it’s a bonus.”
Sharing your experiences with Parkinson’s – Kuhan’s story
“I’m doing nothing more than sharing my experiences of living with Parkinson’s – but I’ve come to realise that has value.”
In the twelve years since his diagnosis, Kuhan has come to value having a positive approach to his Parkinson’s. A former product manager from southwest London, he was diagnosed with early-onset Parkinson’s when he was 38.
“For a long time I didn’t face it,” Kuhan says. “It’s only in the last few years that I have become more open.” During the pandemic Kuhan quit his job, and instead put his tech experience to good use by developing ‘Parkinson’s ON’: a free smartphone app that helps people with the condition track symptoms, meds, activities and self-care tools.
Being involved with the Parkinson’s community has helped Kuhan give back. “After all, the act of giving and volunteering is proven to stimulate dopamine production,” he notes. “So in a way you could say volunteering is a form of treatment.”
Our community newsletter
To ensure we’re engaging with and supporting members of our community, we’ve launched a new Advocacy Community newsletter.
This newsletter not only shares our latest news and opportunities – but highlights specific ways the Parkinson’s community can get involved.
Whether it’s an invite to join one of our focus groups, a call to review grant applications, or simply sharing your interest in a virtual coffee and chat meeting – there are plenty of ways you can support our work!
We’d love you to be part of this journey. Every effort makes a real difference and brings us closer to a world without Parkinson’s. If you’d like to keep up to date with our latest advocacy updates and events, please fill in the form below.
