The Michael J. Fox Foundation for Parkinson’s Research (MJFF) recently announced that its Chief Executive Officer and Co-Founder, Deborah W. Brooks, and MJFF Patient Council member Israel Robledo have been appointed to the inaugural Federal Advisory Council on Parkinson’s Research, Care and Services.
The newly established advisory body will guide the development and implementation of the National Parkinson’s Project (NPP), a comprehensive national strategy to end Parkinson’s disease and atypical parkinsonisms. In addition to representatives from federal agencies like the National Institutes of Health and the U.S. Environmental Protection Agency, the Council includes 10 independent and private sector appointees, including patients, care partners, health care providers, researchers and nonprofit leaders.
Authorized by Congress with near-unanimous bipartisan support and signed into law in 2024, the NPP is being developed and implemented by the U.S. Department of Health and Human Services (HHS). It is a whole-of-government initiative that aims to align federal agencies, accelerate scientific progress and improve care, with the ultimate goals of preventing, diagnosing, treating and curing Parkinson’s, as well as slowing or stopping its progression.
Parkinson’s is one of the fastest-growing neurological disease in the United States and worldwide. Parkinson’s and related diseases affect an estimated more than 1.2 million people in the U.S. alone — underscoring the urgent need for a coordinated national response.
New data further highlights the urgency of this effort: Parkinson’s disease cost the United States USD 82.2 billion in 2024, according to a recent report from The Michael J. Fox Foundation, while a new national voter survey shows strong bipartisan support for increased federal action on the disease, including doubling research investment.
“The National Parkinson’s Project marks a transformative moment in how the United States approaches Parkinson’s, bringing new levels of ambition, collaboration and accountability,” said Brooks, who launched the Foundation in 2000 with Michael J. Fox. “This is a once-in-a-generation opportunity to align federal efforts, accelerate investment in research and unlock breakthroughs that can change the trajectory of Parkinson’s — matching the scale of the disease with a bold, unified national strategy. I’m honored to serve on the Advisory Council and will work to ensure the NPP delivers meaningful, lasting impact for every person and family living with Parkinson’s.”
The Michael J. Fox Foundation played a central role in making this initiative possible, mobilizing tens of thousands of advocates nationwide to earn congressional support for the National Plan to End Parkinson’s Act (2024), the federal law that established the NPP. Through sustained engagement with federal lawmakers — including education, grassroots advocacy and policy leadership — MJFF helped elevate Parkinson’s as a national priority and drive passage of the legislation.
“It’s an honor to be appointed to the National Parkinson’s Project Advisory Council,” said Robledo, a special education teacher from Midland, Texas, who was diagnosed with early-onset Parkinson’s disease at age 42. “As someone who has lived with Parkinson’s for nearly two decades and spent much of that time advocating for better treatments and quality of life, I’m proud to represent the patient community in developing a national strategy that moves us closer to ending Parkinson’s for good.”
Since 2016, Israel Robledo has been a member of the MJFF Patient Council, which was established in 2009 as a formal channel for people living with Parkinson’s to help shape the Foundation’s work, including research priorities and community education efforts.
The NPP Advisory Council will provide recommendations to HHS on research priorities, access to care and services, and strategies to reduce the burden of Parkinson’s. It will also monitor progress and report to Congress at regular intervals, helping ensure accountability and sustained momentum.
MJFF and other leading Parkinson’s organizations are urging several immediate priorities for the Council’s work:
- Produce an estimate of the investments needed to prevent, diagnose, treat, and ultimately cure Parkinson’s as a core deliverable — scaled to meet the growing economic burden of the disease.
- Prioritize improving quality of life for those living with Parkinson’s disease and their families across the lifespan, including young-onset and older adults.
- Reset firm, reasonable reporting timelines to make up for lost time and sustain momentum.
There will be ongoing opportunities for the Parkinson’s community to provide input that shapes the direction and priorities of the NPP. Sign up to join MJFF’s Parkinson’s Policy Network and HHS’s NPP listserv to be alerted when opportunities become available.
To learn more about such appointments , click on the links below.
Ceva Animal Health appoints Sébastien Huron as Deputy Chief Executive Officer
Foundation Medicine Makes Leadership Appointments
Clinch Appoints Melvin Stern as VP of Growth
