One month ago, The Michael J. Fox Foundation (MJFF) and the Parkinson’s Action Network (PAN) announced plans to operate as a single organization with the goal of advancing the development of improved Parkinson’s disease (PD) therapies and ensuring access to treatments and care. 

In the weeks leading up to the announcement, MJFF and PAN launched a dialogue with patients and close supporters of both organizations to ensure MJFF’s policy programming reflects the top public policy concerns of the community. That initial feedback was captured in a white paper released on March 24.  

Members of the Parkinson’s community took to Twitter last month to share their enthusiasm for the unification. 

MJFF asked its Facebook followers to weigh in on what public policy issues they’re most interested in and which they would like to learn more about. The Foundation received nearly 800 responses from passionate community members through social media and an online survey and will use this information to shape future Parkinson’s policy work. 

“The federal approval process and research process needs to be faster and more streamlined.”

- Survey Respondent 

“I just wish the disability policies would acknowledge this disease as a disability and not wait til you get in a bad way before they try to help.”

- Survey Respondent

“Let's coordinate and cooperate in order to avoid duplication of effort. Concentrate on both innovative, radical treatments while trying to develop tests that identify PD early. We MUST make public servants remember for whom they work, not vice versa. No more "favorites" among diseases. PD needs equal footing with breast cancer and other telegenic diseases.”

- Survey Respondent

To read our white paper and learn more about MJFF’s public policy work, visit www.michaeljfox.org/policy.

To offer your own thoughts on Parkinson’s policy priorities, take our survey.