More than 350 disease advocates, representing all 50 U.S. states, took part in The Michael J. Fox Foundation (MJFF) virtual Parkinson’s Policy Forum, urging lawmakers to increase federal investment in Parkinson’s disease (PD) research after years of stagnant support.
Annual funding for the Department of Defense’s Parkinson’s Research Program (PRP) has steadily declined, falling from $25 million in fiscal year 2010 to $16 million in fiscal year 2017, where it has remained, the MJFF reports.
The advocates gathered remotely March 22–24, for sessions that opened with information on best ways to tell their Parkinson’s story, what to expect in virtual meetings with lawmakers, the latest in research and understanding of Parkinson’s biology and the role of genetics and the environment in this disease, and governmental support for research.
“This event brings the Parkinson’s community together as a united voice to educate elected officials about supporting the community and increasing the federal investment in research,” said Sohini Chowdhury in her opening remarks, according to a press release. “Policy advocacy is about bringing your story directly to elected officials. Your voice is powerful.”
Usually held each year in Washington, D.C., the forum convenes patients, families, and scientists for education and training, followed by a day of meetings with legislators on Capitol Hill.
“Storytelling is everything,” said Samantha Felder, a third-year forum attendee and Parkinson’s policy advocate who met with her Wisconsin lawmakers. “It helps show Congress what our life is like on a daily basis.”
As part of the forum, some 221 advocates from 44 states attended 226 virtual meetings with legislators or their staff. Much of the focus was on a need for more federal funding for the Parkinson’s Research Program (PRP), which supports research that aims to better understand the cause, and ways of preventing and treating this neurodegenerative disorder.
At its peak, the PRP received $27 million in funding, MJFF reported in its release. But that amount has tailed off to $16 million — an inflated-adjusted drop of more than 50%. As lawmakers are deciding what to financially support — and for how much — in the upcoming fiscal year, the MJFF is seeking a $25 million PRP investment to support potential breakthroughs.
“There’s still so much we don’t know about Parkinson’s, and we have to build this fundamental knowledge,” said Walter J. Koroshetz, MD, director of the National Institute of Neurological Disorders and Stroke. “But in the meantime, if there is something with promise for people with Parkinson’s or people who are at risk, we want to take those shots on goal and see if we can benefit people today.”
As supporters were meeting virtually with members of Congress, more than 2,000 advocates nationwide contributed to forum efforts through participation in the MJFF’s annual day of advocacy. These supporters communicated with lawmakers via emails and social media posts, emphasizing the need for strong federal research funding.
MJFF invites the public to join in this effort, offering a template email that allows for personal comments to be added and which could be sent on to each constituent’s House and Senate lawmaker.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?