What is Parkinson's Movement?
At the core of The Cure Parkinson’s Trust has always been the unshakeable belief that the individual with PD is key to finding the cure. These PwPs (People with Parkinson’s) have the insight and the inside story that no PhD can provide.
Parkinson’s Movement was originally developed in 2010 by three forward-thinking PwPs; Dr Jon Stamford, Tom Isaacs and Sara Riggare. They had a clear vision of encouraging greater advocacy in Parkinson’s through the creation of an active and influential online community for the collective voice of people with Parkinson’s. As it grew, a number of advocates from North America embraced this vision, particularly Israel Robledo, Steve de Witt and Dr Soania Mathur.
Parkinson’s Movement strives to strengthen the position of Parkinson’s as a health priority globally. By providing a genuine, powerful tool for driving change, we can inform and influence the agenda of the wider Parkinson’s community. We are helping research in three key ways:
- Advocacy and engagement – Involving people with Parkinson’s in shaping the research that will affect them
- Identifying insights – Collecting information about symptoms and learning from the day to day experiences of people with Parkinson’s to inform researchers and create research insights
- Translating research – Putting existing and upcoming research into context and explaining it such that everyone interested in Parkinson’s has access to the same information, increasing the potential of the research to impact the disease in the short, medium or long term
“In its simplest form, the goal is to get people with Parkinson’s involved in finding a cure for PD.
This is not limited to clinical trial participation but falls into the realms of political change, big pharma, research direction and protocol development, public awareness, fundraising etc.
Once the avenues are defined, then it makes sense for us to come up with concrete ways to pursue those avenues. And most importantly that there be co-ordination of those efforts, giving advocates clear direction and feedback for those who do make a difference (which will serve as an example for others as well as keeping advocates engaged).
We also need to spread the message of the importance of patient engagement in the search for a cure, to enlighten the research and clinical community to its value; thereby becoming a “go to” resource for the patient voice and involvement…”Soania Mathur
“During my time working in the Parkinson’s field, I have come to realise there is a patent lack of communication between scientists, clinicians and people living with Parkinson’s, industry and charities. There is no doubt in my mind that if we all worked together as a team, that this would unlock the gates to a wealth of new thinking, new ideas and, most importantly pave the way to a spate of breakthrough treatments.”Tom Isaacs
With considerable thanks to the following:
Eros Bresolin, David Sangster, Gaynor Edwards, Leah Mursaleen, Ellie Masters-Gregory, Julia Jockelson, Bas Bloem, Patrik Brundin, Kayla Habermehl, Dave Weeden, Rasjel van der Holst , Einar Frederickson, Dominic Graham, Bruce Hellman, John Dean and Josefa Domingos