Advocacy groups urge fast action on new national Parkinson’s plan
MJFF, others ask new council to push for increased funding, access to care
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- Advocacy groups urge the National Parkinson's Project Advisory Council to act swiftly.
- Priorities include increased research funding and better access to specialized Parkinson's care.
- The groups want the council to deliver its first report within a year and provide public updates.
Parkinson’s advocacy organizations are urging the newly established National Parkinson’s Project Advisory Council to move quickly to implement the project, a U.S. strategy to prevent, diagnose, treat, and ultimately cure Parkinson’s disease.
The American Parkinson Disease Association (APDA), The Michael J. Fox Foundation for Parkinson’s Research (MJFF), the Parkinson’s Foundation, and CurePSP highlighted increased research funding and improved access to specialized care as key priorities for the council, which was scheduled to hold its first meeting on June 29.
The advisory council is tasked with advising the Health and Human Services secretary on implementing the National Parkinson’s Project. Its recommendations are expected to help shape federal research priorities and strengthen coordination of Parkinson’s research and services across government agencies.
“The seating of the National Parkinson’s Project Advisory Council was an important milestone for the Parkinson’s community, and its first meeting is where the work begins in earnest,” APDA, MJFF, the Parkinson’s Foundation, and CurePSP said in a joint statement issued ahead of the meeting.
The National Plan to End Parkinson’s Act was signed into law in 2024, formally establishing the National Parkinson’s Project. The initiative’s goal is to create a coordinated national approach to prevent, improve early diagnosis, and support the development of treatments to ease Parkinson’s symptoms and slow or stop the progression of the disease.
Seeking ‘measurable progress’
“People living with Parkinson’s and atypical parkinsonisms, families, care partners, clinicians and researchers are counting on the Council to turn this historic mandate into measurable progress,” said Anne Hubbard, APDA’s chief public policy officer; Dan Feehan, MJFF’s chief policy and government affairs officer; Andi Lipstein Fristedt, the Parkinson’s Foundation’s executive vice president and chief strategy and policy officer; and Nora Wong, CurePSP’s associate director of public policy. “We stand ready to support the Council, and we urge its members to move with both urgency and rigor to identify and propose recommendations to prevent, treat, and ultimately cure Parkinson’s disease.”
Council members were appointed in April, following a request from the advocacy organizations for the establishment of the project and its advisory body. The council includes representatives from federal agencies including the National Institutes of Health and the U.S. Environmental Protection Agency. Independent and private-sector appointees include patients, care partners, healthcare providers, researchers, and representatives affiliated with ADPA, MJFF, Parkinson’s Foundation, and CurePSP.
The organizations outlined three immediate priorities for the council:
First, they urged the council to keep the project on schedule and deliver its first report within one year. They also advised the council to provide regular public updates so patients, families, and Congress can monitor the project’s progress.
Second, they called for an evidence-based assessment of needed investments and a long-term, sustainable funding strategy. According to the organizations, Parkinson’s disease and atypical parkinsonism imposed an estimated $82.2 billion economic burden in 2024, while current federal research funding represents less than 1% of that amount.
Using the National Alzheimer’s Project as an example, the groups proposed a target of at least $1.5 billion in annual research funding by 2032. The Alzheimer’s effort boosted funding by 4.5-fold in its first five years.
Third, the advocacy groups emphasized the need for practical recommendations to improve access to comprehensive, high-quality care. Fewer than 10% of people with Parkinson’s are followed by movement disorder specialists, and many have limited access to rehabilitation and mental health services, they said.
The groups said the plan should address the needs of people across all stages of life, including those with young-onset Parkinson’s disease and atypical parkinsonism.
“We stand ready to support the Council, and we urge its members to move with both urgency and rigor to identify and propose recommendations to prevent, treat, and ultimately cure Parkinson’s disease,” the organizations said.
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