Government policies have a direct effect on the scope of Parkinson's disease (PD) care and research. The federal government is the largest funder of PD research, approves new PD drugs to ensure they are safe and effective and helps people with Parkinson's access services that can increase quality of life.
The Michael J. Fox Foundation advocates for government policies that accelerate the development of Parkinson's therapies and reduce barriers to care and support services. The Foundation works to educate government leaders on patient needs and represents the patient voice in conversations with federal agencies, drug developers and insurance companies.
Historically, the Parkinson's Action Network (PAN) served as the unified voice of the PD community on public policy and advocacy issues. Key PAN staff and programs transitioned to MJFF in June 2016 to advance this important work.
PAN, which was founded in 1991 by Joan Samuelson, helped to increase federal funding for PD research and expand physical, occupational and speech-language therapy services for people with PD. The organization also worked to enact legislation that created the Morris K. Udall Centers of Excellence for Parkinson's Disease Research, among other contributions.
Through its unification with PAN, MJFF will lead a cohesive research and policy effort to bring new treatments to market quickly and increase quality of life. To learn more about MJFF's public policy work, explore the additional resources on this page and read our FAQs below.
How does MJFF's policy work support drug development and research toward a cure?
Since MJFF launched in 2000, the landscape of Parkinson's disease drug development has evolved significantly. At launch, Parkinson's research as a whole lay primarily in basic research and few promising drug candidates were advancing toward clinical testing. Today, more PD drug candidates are reaching late-stage clinical testing and entering complex regulatory and reimbursement approval processes. For some untreated symptoms of Parkinson's disease, such as cognitive decline, regulatory pathways may not yet exist.
Further, government funding for the National Institutes of Health (NIH) -- U.S. taxpayers' vehicle to finance basic scientific and medical research -- does not match current research needs. The NIH is the largest funder of PD research, and changes to its budget put more responsibility on private companies for discovery and validation.
MJFF is uniquely positioned to represent the patient voice in conversations among companies, regulators and payers -- helping to tee up "win-wins" for Parkinson's drug makers and patients by ensuring all aspects of therapeutic development are informed by the most critical unmet needs of those living with the disease.
What policy issues does MJFF focus on?
Is the PAN Grassroots Leaders program continuing?
How will MJFF work with the rest of the PD community on public policy matters?
Does MJFF have a Washington, D.C. office?
Is the PAN website still active?
MJFF welcomes input from industry on public policy issues affecting the Parkinson's community. While MJFF may use this information to help advance policy initiatives that benefit patients, families and caregivers, the Foundation does not accept industry funding for public policy activities. Any proposed sponsorship opportunities that create a perceived conflict of interest or imply MJFF backing of one industry group over another are not allowed.
Policy and Advocacy Volunteer Directory
Meet the individuals representing the patient voice on Capitol Hill
Read our white paper on community priorities for PD Policy.
Congressional Caucus on Parkinson's Disease
This Caucus increases awareness on Capitol Hill of the policy needs of the Parkinsonís community.
Unified Parkinson's Advocacy Council
Representatives of state, regional and national PD organizations†contribute to Parkinsonís policy work through this council.