What is Parkinson's Movement?
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.
- 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
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.
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…”
Eros Bresolin, David Sangster, Gaynor Edwards, Julia Jockelson, Leah Mursaleen, Ellie Masters-Gregory, Bas Bloem, Patrik Brundin, Kayla Habermehl, Dave Weeden, Rasjel van der Holst , Einar Frederickson, Dominic Graham, Bruce Hellman, John Dean and Josefa Domingos