Parkinson’s Movement works to try to connect patient experience with scientific expertise. It is an active patient’s group which works to ensure the patient’s voice is heard and can influence all areas of practice in relation to Parkinson’s.
We pool information and opinions, giving people living with Parkinson’s a global voice and one which is solely focused on improving the treatment of Parkinson’s and the conduct of clinical trials without organisational bias.
PM is led and facilitated by a group of people who are living with the condition and are active advocates. Most recently, PM has embarked on a project to improve the clinical trial process to make it faster, more relevant and more patient-orientated. The main focus of this is the development of a Charter for Clinical Trials which aims to improve the experience of clinical trials for those with Parkinson’s, and to improve the value of clinical trials for those who conduct them.
PM was founded by people with Parkinson’s, is run by people with Parkinson’s and its strategy and influence are all defined by people with Parkinson’s. When you have Parkinson’s you lose control over the most important thing in your life: your health. Parkinson’s Movement provides the platform from which together we can regain control over our lives. Our experiences need to shape the Parkinson’s world from diagnosis to symptom management to clinical trials right through to identifying breakthrough treatments.
Steven DeWitte showed Parkinsonian symptoms in 2003, but avoided the official diagnosis until March 2005 at the age of 48. Steven DeWitte is the founder and Chief Executive Officer of the Connecticut Advocates for Parkinson’s (CAP). Since inception in 2006, CAP has grown from eight members, to two chapters and over 100 active constituents. Steve serves in advisory roles for such organizations as Parkinson’s Movement, the Parkinson Action Network, and the Michael J. Fox Foundation. He served as an Ambassador for the World Parkinson Congress in 2013, and was a graduate of the inaugural PAIR (Parkinson’s Advocates In Research) Program. Steve is on the steering committee for the Parkinson’s movement.
Tom Isaacs was diagnosed with Parkinson’s at the age of 27. In 2002, he walked 4,500 miles around the coastline of Britain raising £350,000 in aid of research for Parkinson’s. In 2005 he co-founded The Cure Parkinson’s trust and has since also co-founded Parkinson’s Movement. In 2010 and 2013 he chaired the Patient Advocates Committee at the World Parkinson Congress and he had also served for five years on the board of the European Parkinson’s Disease Association. Tom authored the book, Shake Well Before Use, speaks regularly about Parkinson’s to a variety of audiences and plays an active role in progressing Parkinson’s research.
Israel Robledo was diagnosed with Parkinson’s in 2007. Israel is an Executive Council Member of PM and a highly driven and committed advocate. As well as being Texas State Director of the Parkinson’s Action Network, Israel is an ambassador for the World Parkinson Congress, Fox Trial Finder and Partners in Parkinson’s. His tireless commitment to advocacy in the Parkinson’s arena has been formally recognised as he has been awarded the Murray Charters Award for outstanding service to the Parkinson’s community and has also received the Milly Kondracke Award for outstanding advocacy. Follow Israel’s blog.
Jon Stamford spent more than 20 years as an academic neuroscientist, heading a research lab with a particular interest in Parkinson’s. Jon’s research interest in PD was given a dramatic if unwelcome personal twist in 2006 when he was diagnosed with Parkinson’s at the age of 49. But, never one to miss an opportunity, Jon has written four books on living with Parkinson’s, based on his blogs Slice of Life and Shadows and Light. Jon is a co-founder and director of Parkinson’s Movement.
- Progress in Parkinson’s, both in terms of its management and improvements to its treatment, is extremely slow. There have been advances in the understanding of Parkinson’s and there is the very real possibility of therapies with the capacity to modify the course of the condition in the pipeline. However, these…
- Our second 'Rallying' Meeting took place on Wednesday 30th September during the Grand Challenges in Parkinson's Disease event in Grand Rapids, Michigan. Wednesday, September 30 10:30 am: Tom Isaacs (Co-founder and president, The Cure Parkinson’s Trust): Rallying to the Challenge II 10:45 am: Progress from Rallying to the Challenge I (series of…