PD and Public Policy
In June 2016, two big groups formed one cohesive organization focused on public policy as it impacts the Parkinson’s community. The Michael J. Fox Foundation for Parkinson’s Research (MJFF) absorbed the Parkinson’s Action Network (PAN), which formerly had served as the voice of the PD community on government regulations and legislation. The result a unified effort that covers the full spectrum of causes, from research development to drug approvals magnifies the push of advocates to effect change. MJFF works across the aisle, with both political parties, says Ted Thompson, senior vice president of public policy: “Your strongest opposition on one issue may become your greatest champion on another one.” Through this process, the MJFF policy team celebrated a victory in December, when the 21st Century Cures Act was signed into law. One provision, which would create a national data collection system for brain diseases, took nearly a decade to enact.
How Can You Be Part of the Change?
By connecting with lawmakers, you could help to increase federal funding for research and affordable access to healthcare. Visit michaeljfox.org to learn how to contact your elected officials. Tell them what you think about topics such as healthcare changes and biomedical research. Though engaging with elected officials may feel intimidating, advocating for public policy issues “is not magic,” says Thompson. “Every person has a voice. And it is the job of the elected official to listen.”
Share Your Story With Policymakers
The Michael J. Fox Foundation for Parkinson’s Research offers helpful tools to get you started.
- - Through easy online forms, compose your own message to elected officials or contact lawmakers on various issues, get handouts for in person meetings and much more.
- - Connect with policy and advocacy volunteers across the country.
- - Keep up with research updates and public policy news on the Foxfeed blog
- - Sign up for action alerts or notifications to contact your lawmakers when important issues arise that affect the PD community.
Origanally published in MoreThanMotion, Fall 2017.