Ahead of First National Parkinson's Project Advisory Council Meeting, Leading Parkinson's Organizations Call for Urgent Action

WASHINGTON, June 26, 2026 /PRNewswire/ -- Ahead of the first meeting of the National Advisory Council on Parkinson's Research, Care, and Services on June 29, 2026, the American Parkinson Disease Association (APDA), The Michael J. Fox Foundation for Parkinson's Research (MJFF), the Parkinson's Foundation, and CurePSP today called on the Council to move quickly and decisively to advance the National Parkinson's Project, the first-ever federal initiative to prevent, diagnose, treat and cure Parkinson's disease.

The Council comprises representatives from federal agencies like the National Institutes of Health and the U.S. Environmental Protection Agency, and includes 10 independent and private sector appointees, including patients, care partners, health care providers, researchers and nonprofit leaders. Representatives affiliated with ADPA, MJFF, Parkinson's Foundation and CurePSP are included on the Council.

The Council, created by the National Plan to End Parkinson's Act, is responsible for advising the Secretary of Health and Human Services (HHS) on the implementation of the National Parkinson's Project. Its first meeting represents a pivotal opportunity to set priorities, build momentum and deliver results for the more than 1.2 million Americans living with Parkinson's disease and atypical parkinsonisms.

In a joint statement, Anne Hubbard, chief public policy officer, American Parkinson Disease Association (APDA); Dan Feehan, chief policy and government affairs officer at The Michael J. Fox Foundation; Andi Lipstein Fristedt, Parkinson's Foundation executive vice president & chief strategy and policy officer; and Nora Wong, associate director of public policy at CurePSP said:

"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. 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. 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."

These leading organizations are highlighting three initial asks of the Advisory Council:

1. Keep the National Parkinson's Project on track and produce the first report within one year.
   We are encouraged by the work already underway and are confident that a one-year deadline balances urgency with the time needed to produce high-quality work. The organizations encourage the Council to provide regular public updates so the entire Parkinson's community and Congress can track progress.
   
   
2. Prioritize an estimate of the investments needed to prevent, diagnose, treat and cure Parkinson's disease as an early work product. 
   Congress needs an evidence-based roadmap to right-size federal funding and establish a long-term, sustainable funding strategy. Parkinson's research is entering a critical era of scientific advances and potential breakthroughs; at the same time, the prevalence and economic burden of Parkinson's disease and atypical parkinsonisms continue to rise. These conditions impose growing costs on individuals, families, health care systems and the national economy — totaling an estimated $82.2 billion in 2024 alone. Federal investment in Parkinson's research totals less than 1% of that figure.
   
   Early investment drives results. In the first five years of the National Alzheimer's Project, NIH research spending grew 4.5-fold. For Parkinson's, a reasonable target would be at least $1.5 billion in federal research funding by 2032. Over the long term, the Council should consult experts in health economics to identify the level of investment needed to address the gaps in research, prevention, and care for the Parkinson's community.
   
   
3. Include actionable recommendations to improve access to integrated, high-quality care and reduce financial burdens on families of people with Parkinson's.
   These recommendations should account for needs across the lifespan, including specific consideration for people with Young-Onset Parkinson's disease (YOPD), as well as the unique needs of people with atypical parkinsonisms. Today, fewer than 10% of people with Parkinson's receive care from a movement disorders specialist, and most have limited access to needed rehabilitation and mental health services.

Read the public comments submitted to the Advisory Council by the American Parkinson Disease Association (APDA), The Michael J. Fox Foundation for Parkinson's Research (MJFF), the Parkinson's Foundation, and CurePSP.

Watch the Advisory Council meeting at https://www.hhs.gov/live on Monday, June 29, 2026 beginning at 10 a.m. ET.

About the American Parkinson Disease Association
The American Parkinson Disease Association (APDA) is a nonprofit organization dedicated to fighting Parkinson's disease (PD) by providing the support, education, research, and community that helps everyone impacted by PD live life to the fullest. Through a nationwide grassroots network of Chapters and Information & Referral (I&R) Centers, APDA works tirelessly to raise public awareness of this chronic neurologic movement disorder and deliver outstanding patient services, resources, and educational and wellness programs to the approximately one million people living with PD in the United States and their care partners and families. Envisioning a world without PD, APDA's national research program and Centers for Advanced Research aim to provide better treatments and unlock the mysteries of the disease. APDA is also committed to advancing public policy solutions that improve lives and move us toward a cure. Founded in 1961, APDA has raised and invested more than $338 million in its efforts to support the PD community. Learn more at www.apdaparkinson.org.

About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors, and volunteers. In addition to funding $3 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, MJFF forges groundbreaking collaborations, creates robust open-access data sets and biosample libraries with its landmark clinical study (PPMI), increases the flow of participants into Parkinson's disease clinical trials with its online tool (Fox Trial Finder), promotes Parkinson's awareness, and coordinates the grassroots involvement of thousands of Team Fox members around the world. For more information, visit us at www.michaeljfox.org, Facebook, Instagram and LinkedIn.

About the Parkinson's Foundation
The Parkinson's Foundation makes life better for people with Parkinson's disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson's community. Since 1957, the Parkinson's Foundation has invested more than $513 million in Parkinson's research and clinical care. Connect with us on Parkinson.org, Facebook, X, Instagram or call 1-800-4PD-INFO (1-800-473-4636).

About CurePSP
CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, CurePSP establishes important partnerships and funds critical research internationally. Through its advocacy and support efforts, CurePSP enhances education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of CurePSP's mission and all its services. CurePSP is a registered 501(c)(3) charity within the United States (EIN: 52-1704978).

SOURCE The Michael J. Fox Foundation for Parkinson's Research