Announcement marks significant step forward for federal policy discussions

Washington, D.C. (April 10, 2026) — The Parkinson’s Foundation applauds today’s Department of Health and Human Services’ (HHS) announcement appointing the Advisory Council created by the National Plan to End Parkinson’s Act (P.L. 118-66). Leading efforts to urge HHS to seat the Advisory Council, in collaboration with congressional champions and thousands of advocates around the country, the Parkinson’s Foundation celebrates this significant milestone in the national effort to improve the lives of people living with Parkinson’s disease (PD) and advance research towards a cure. Now is the time to increase federal investments and government coordination to advance the National Parkinson’s Project. The National Parkinson’s Project, created by the National Plan to End Parkinson’s Act, is the first-ever federal initiative to prevent and cure Parkinson’s disease, treat its symptoms and slow or stop its progression.

The establishment of the Advisory Council represents a critical step towards advancing the National Parkinson’s Project, with members of the Council advising the HHS Secretary on implementation of the project and Parkinson’s-related projects. A new national poll reinforces that an overwhelming majority (4-in-5) voters support a clear national strategy to improve prevention, treatment and care of Parkinsons, including the addition of hundreds of millions in federal research dollars. The Advisory Council is responsible for evaluating and advancing the National Parkinson’s Project, including providing recommendations for diagnosing, treating, preventing and ultimately finding a cure for PD. This unique model creates an opportunity for researchers, federal staff, people living with Parkinson’s and care partners to collaborate.

Now, HHS must focus on fully implementing the National Parkinson’s Project, including:

1. Producing an estimate of the investments needed to prevent, diagnose, treat and cure Parkinson’s disease. A comprehensive estimate should include, but not be limited to, full research costs to achieve new disease-modifying therapeutics, research to understand toxic exposures and mitigation measures, the costs needed to address provider shortages, unmet caregiving needs and long-term care coverage.
2. Prioritizing quality care for everyone living with Parkinson’s in the first annual report. The report should provide actionable recommendations for priority actions to improve Parkinson’s care for people across the lifespan.
3. Setting firm reporting timelines to make up for lost time and sustain momentum. HHS has already missed the statutory deadline for the first mandatory biannual report. The Foundation is joining with partners and Congress to call for the release of the report by January 2, 2027.

“Today’s announcement is an important victory for the Parkinson’s community, as people living with Parkinson’s, care partners, experts and advocates will all come together through the Advisory Council,” said Andi Lipstein Fristedt, Executive Vice President, Chief Strategy and Policy Officer for the Parkinson’s Foundation. “The Foundation commends the Administration and Congress for their leadership in advancing this historic legislation and for appointing the Advisory Council. It is urgent that HHS and the Council meet this critical moment to prevent, treat, and cure Parkinson’s disease and we look forward to continuing to work closely with them to deliver progress for the Parkinson’s community on this important initiative.”

National Medical Advisor to Parkinson’s Foundation Dr. Michael Okun is one of the members appointed to the Advisory Council. Dr. Okun served as National Medical Director and Advisor to the Parkinson’s Foundation since 2006, and as of 2025 he chairs the Foundation’s recently created Clinical Advisory Council. He is dedicated to the concept of interdisciplinary care, and he has worked with the Parkinson’s Foundation Centers of Excellence grow and to help foster the best possible environments for care, research and outreach in Parkinson's disease (PD). “We need answers to the most fundamental questions. Why does Parkinson’s start, why does it spread, and why does it progress. A national plan must align science to tackle each of these with urgency and purpose,” said Dr. Okun. Uniquely positioned to ensure the National Parkinson’s Plan is informed by both science and lived experiences to improve the lives of people living with PD, appointed members of the Council, including Dr. Okun, will implement the National Parkinson’s Project and advance research towards a cure.

To learn more about the Foundation’s policy work and opportunities, or to get involved, visit Parkinson.org/Policy.