Leading Parkinson's Organizations Urge Rapid Action Prior to Council's Historic Meeting

Urgent Actions Needed Before National Parkinson's Council Meeting

As we approach the first gathering of the National Advisory Council focused on Parkinson's Research, Care, and Services set for June 29, 2026, influential organizations focused on Parkinson's disease are rallying to call for swift action. The American Parkinson Disease Association (APDA), The Michael J. Fox Foundation for Parkinson's Research (MJFF), the Parkinson's Foundation, and CurePSP are cooperating to maintain momentum ahead of this pivotal event, which marks the beginning of the National Parkinson's Project — a comprehensive federal initiative aimed at mitigating Parkinson's disease through enhanced diagnostics, treatment options, and ultimately, finding a cure.

The Council brings together representatives from crucial federal agencies such as the National Institutes of Health and the U.S. Environmental Protection Agency, complemented by appointees from private sectors, including patients, caregivers, healthcare professionals, scientists, and nonprofit leaders. The composition of the Council reflects a diverse array of perspectives and expertise; including representatives from organizations like APDA, MJFF, Parkinson's Foundation, and CurePSP ensures that voices from various facets of the Parkinson's community are well-represented.

This initial meeting is crucial for establishing priorities and generating actionable results for the over 1.2 million Americans currently battling Parkinson's disease and similar disorders. Anne Hubbard from APDA, among others, issued a joint statement emphasizing the importance of this meeting. They underscored the aspirations of people affected by Parkinson's, their families, caregivers, clinicians, and researchers, all of whom are anticipating significant progress from the Council.

Three Initial Asks from Leading Organizations

The organizations articulated three main requests that they believe should guide the Council's early efforts:

1. Timely Reporting to Maintain Momentum: It is critical for the Council to keep the National Parkinson's Project on schedule and deliver its initial report within a year. This timeline strikes a necessary balance, preserving momentum while allowing sufficient time for quality work. Additionally, regular public updates are essential for the Parkinson's community and Congress to monitor ongoing developments.

2. An Investment Plan: The Council should prioritize creating an estimate of required financial resources to effectively prevent, diagnose, and treat Parkinson's disease. As the economic burden of Parkinson's continues to escalate — projected to surpass $82.2 billion in 2024 — it becomes imperative for federal funding strategies to match these needs. As it stands, federal investments in Parkinson's research are less than 1% of this cost; hence, a target of at least $1.5 billion in federal research funding by 2032 would be a constructive starting point. An evidence-based roadmap is crucial for right-sizing Congressional funding to combat the growing challenges of this disease.

3. Actionable Recommendations for Improved Care: The final plank of their appeal stresses generating actionable recommendations that enhance access to integrated care while easing financial burdens on the families of individuals with Parkinson's. Special emphasis should also be placed on meeting the needs of those diagnosed with Young-Onset Parkinson's disease (YOPD) and various atypical forms of the disease. Statistics indicate that fewer than 10% of Parkinson's patients receive adequate care from movement disorders specialists, and many struggle to access necessary rehabilitation and mental health services.

As the June 29 meeting nears, the collaborative efforts of these organizations reaffirm the urgent need to translate policy into impactful results. Their collective voices are poised to guide the Council's pivotal work in shaping a future where better treatments, improved care, and a roadmap toward a cure for Parkinson's disease are possible.

For further insights and updates, interested individuals can follow the proceedings through the live coverage available at https://www.hhs.gov/live, commencing at 10 a.m. ET on the day of the meeting, June 29, 2026.

About Participating Organizations

American Parkinson Disease Association (APDA): The APDA is a dedicated nonprofit dedicated to enhancing the lives of those affected by Parkinson's disease through research, support, and education. Since its inception in 1961, the APDA has invested over $338 million into supporting the Parkinson's community through clinical research, public awareness, and advocacy efforts.

The Michael J. Fox Foundation for Parkinson's Research (MJFF): MJFF stands as the foremost nonprofit funder of Parkinson's research, with nearly $3 billion committed to driving advancements in care and therapies. The foundation uniquely fosters collaboration among key stakeholders while executing a rigorous research agenda aimed at accelerating progress toward a cure.

Parkinson's Foundation: Established to advance life quality for those affected, the Parkinson's Foundation has committed over $513 million to research and care initiatives since 1957. Its global reach aims to unify the Parkinson's community around shared goals of improved treatment and outcomes.

CurePSP: This nonprofit organization addresses the need for heightened awareness and research funding dedicated to progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). It actively supports patient care and quality of life advancements alongside efforts towards establishing new treatment pathways.