Earlier this week, more than 50 Parkinson’s researchers from 28 states gathered in Washington D.C. for The Michael J. Fox Foundation’s (MJFF) Researcher Hill Day. The goal of the event was to urge Congress to increase federal funding for Parkinson’s disease research. Similar to the Parkinson’s Policy Forum (an event for people with Parkinson's and care partners to take part in the public policy process), the scientists and medical professionals in attendance participated in advocacy training before heading to Capitol Hill for a full day of meetings with our nation's lawmakers. This was the second year MJFF hosted Researcher Hill Day.
Throughout 96 meetings, researcher-advocates had three key asks. First, they asked lawmakers to support $44.7 billion in funding the National Institutes of Health (NIH), a $3 billion increase from last year. Second, they asked for $25 million for the Department of Defense (DoD) Parkinson’s Research Program, which is the only federally funded Parkinson’s-specific research program. And third, they extended an invitation to members of the House and Senate to join the Congressional Caucus on Parkinson’s Disease, a bipartisan group that champions Parkinson’s policy priorities.
“To do the research, we need federal funding,” said Moshahid Khan, PhD, Parkinson’s researcher and assistant professor at University of Tennessee Health Science Center who met with Representative Steve Cohen (D-TN), a current member of the Congressional Caucus on Parkinson’s Disease. “We can’t collect data or know which direction to go in without it.” In the meeting, Khan and his fellow researcher-advocates discussed what they’re working on now, how federal funding is critical to finding a cure for the disease, and the latest research insights about what’s going on back in their home state of Tennessee.
“When the federal funding increases, suddenly there's a new diversity of options,” said Jonathan Jackson, PhD, Director of the Community, Access, Recruitment, and Engagement (CARE) Research Center at Massachusetts General Hospital. “There's a new diversity of people that can be involved and it really is a game changer. It's not just doing more of the same kind of research, it's about doing new and transformative research on new people in new places with new ideas. And really, federally funded research is the only driver at that kind of scale.”
“Advocating brings attention to Parkinson's disease and really lets people know there are millions of patients that are living with it,” said Ashley Harms, PhD, assistant professor at the University of Alabama at Birmingham. “We have to do all we can right now to stop the disease. Meeting with lawmakers is a great way to let them know about what you do and to give back to the community.”
Harms met with staffers of Senator Richard Shelby (R-AL), the Chairman of the Senate Committee on Appropriations, which oversees the federal budget and is responsible for allocating funds to government agencies, departments and organizations on an annual basis. Harms shared data about what Parkinson’s disease costs our country every year — which is $52 billion, $25 billion of which is paid for by the federal government.
While researchers were on Capitol Hill, Parkinson's advocates across the country joined in on the action. They sent more than 4,200 emails or tweets to their legislators asking for increased funding for the NIH and DoD, strengthening the conversations scientists were having in Washington.
You can help amplify this message from wherever you live. Contact your lawmakers today and ask them to invest in critical Parkinson’s breakthroughs.
Interested in learning more about advocacy? Explore our advocacy resources.
Moshahid Khan (left) and researcher-advocates met with Representative Steve Cohen (D-TN) (second from right).
Ashley Harms met with staffers of Senator Richard Shelby (R-AL), the Chairman of the Senate Committee on Appropriations, which oversees the federal budget.