Parkinson’s advocates push for urgency as national plan begins
First advisory council meeting drew more than 160 public comments
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- The National Parkinson’s Project Advisory Council expects to deliver its first report by summer 2027.
- The national plan aims to improve Parkinson’s prevention, diagnosis, treatment, and efforts toward a cure.
- Advocates say clearer federal funding needs are important for research, care, and quality of life.
The first meeting of the National Parkinson’s Project Advisory Council, held on June 29, ended with a commitment to deliver a first report by summer 2027, while acknowledging that more clarity is needed on the federal funding required for Parkinson’s disease research and care.
The National Parkinson’s Project and its Advisory Council were created under the National Plan to End Parkinson’s Act, signed into law in 2024, following advocacy by organizations and people with Parkinson’s who urged Congress to create a coordinated federal response to the disease. The council brings together Parkinson’s experts, government officials, care partners, advocates, and people living with Parkinson’s to develop the first national plan to better prevent, diagnose, and treat Parkinson’s.
Council includes expert, patient voices
Michael S. Okun, MD, National Medical Advisor to the Parkinson’s Foundation, was appointed to the council, helping ensure the national plan reflects scientific expertise and lived experience, according to the foundation.
“Parkinson’s is relentlessly progressive, devastating patients and families alike, and is on track to further strain our healthcare system,” Ken Chason, vice chair of the Parkinson’s Foundation People with Parkinson’s Advisory Council, who is living with Parkinson’s, wrote in his testimony, highlighted in a press release. “To fully understand the challenge and chart a way forward, it is essential to hear from people who live with Parkinson’s every day. As the Council begins its work, I urge it to keep the experiences of those living with Parkinson’s in mind.”
This meeting marked the official start of the Council’s public work on the National Parkinson’s Project, the first U.S. national strategy aimed at improving Parkinson’s prevention, diagnosis, treatment, and, ultimately, finding a cure.
The meeting highlighted three priorities that advocates urged should guide the council’s work.
The first was urgency. Leadership from the National Institute of Neurological Disorders and Stroke acknowledged that initial deadlines had already slipped and emphasized the need for actionable recommendations quickly. Council members indicated they expect to issue their first report in summer 2027, consistent with advocates’ request for a first report within one year.
Funding needs also in focus
Another major focus was funding. Council members recognized the importance of estimating how much federal investment would be needed across Parkinson’s research and care, as well as resources needed to improve quality of life for people with the disease. This could help Congress determine funding priorities and evaluate future federal investment.
The meeting also drew strong public participation, with more than 160 public comments submitted. Ten people were selected to speak, including Chason. In his testimony, he focused on his diagnostic journey while calling for timely recommendations, better access to high-quality care, and resources needed to improve Parkinson’s prevention, diagnosis, and treatment.
“The Parkinson’s crisis is real and urgent,” Chason wrote. “More than 1.1 million Americans have the disease, with approximately 90,000 new diagnoses each year.”
The meeting follows recent calls from several Parkinson’s organizations — including the Parkinson’s Foundation, the American Parkinson Disease Association (APDA), The Michael J. Fox Foundation for Parkinson’s Research (MJFF), and CurePSP — urging the advisory council to act quickly.
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