Advocates urge Congress to boost Parkinson’s research funding
Groups tell lawmakers $600M in annual funding is needed by 2028
More than 250 Parkinson’s patients, family members, scientists, and advocates gathered recently in Washington to urge Congress to expand federal funding for Parkinson’s disease research at the National Institutes of Health (NIH).
They were part of the annual Parkinson’s Policy Forum, hosted by organizations including the Michael J. Fox Foundation (MJFF), the American Parkinson Disease Association (APDA), the Lewy Body Dementia Association, the Parkinson’s Foundation, and the Parkinson’s & Movement Disorder Alliance. The two-day event included meetings with lawmakers, the forum’s first in-person Capitol Hill Day since 2019.
The advocates are hoping for a commitment of $600 million in annual funding by 2028 to advance research and treatments and reduce the disease’s burden.
“The mission of the Parkinson’s Foundation is rooted in taking immediate action that can make life better for people living with [Parkinson’s disease] today, while also advancing research toward a cure for a better tomorrow,” Andi Lipstein Fristedt, Parkinson’s Foundation executive vice president and chief strategy and policy officer, said in a foundation press release.
Sharing stories about life with Parkinson’s helps guide policy decisions
Forum attendee Lynn Hagerbrant said the opportunity to meet face to face with lawmakers “gives us the chance to show them the reality of living with Parkinson’s disease — from our daily challenges to our hopes for the future.”
“By sharing our stories, we can help shape the policies and funding decisions that will bring us closer to a world without Parkinson’s,” Hagerbrant said.
The advocates urged the government to implement and fund the National Parkinson’s Project (NPP) to improve diagnosis, treatment, and prevention of Parkinson’s, supporting the allocation of $5 million in fiscal 2026 to launch the initiative.
The forum also pushed for an Environmental Protection Agency (EPA) rule banning the use of the herbicide paraquat, which has been shown to increase the risk of developing Parkinson’s. Seventy countries, including China and every European Union country, have banned paraquat due to its risks to human health, and a decision from the EPA has been pending since 2022, the advocates said.
“Advocacy is about standing side by side with our loved ones living with Parkinson’s to push for better care, more support and a brighter future. That united strength is what drives us closer to a cure for Parkinson’s disease,” said Lonnie Ali, care partner and wife of the late Muhammad Ali.
The Unified Parkinson’s Advocacy Council, which brings together U.S. national and local organizations in Parkinson’s, hosted a Virtual Parkinson’s National Day of Action on Sept. 9, so advocates could support the forum’s mission from home by emailing lawmakers.
“We’re proud to stand with thousands of advocates and partner organizations to show Congress how yesterday’s research investments have fueled today’s breakthroughs — and why bold federal action is urgently needed to turn scientific discoveries into treatments, and ultimately, a cure,” said Dan Feehan, chief policy and government affairs officer at MJFF.
MJFF, APDA, and the Parkinson’s Foundation earlier this year issued a joint statement asking lawmakers to make a strong national investment in the NIH.
“With over a million people in the United States diagnosed with Parkinson’s disease and a new diagnosis made every six minutes … we call on Congress to recognize Parkinson’s disease as a national priority,” said Anne Hubbard, APDA’s chief public policy officer.
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