ALLYSE FALCE
Policy
AT D. C. POLICY FORUM, ADVOCATES HIGHLIGHT URGENT NEED FOR RESEARCH FUNDING
Photos by Joe Shymanski by ALLYSE FALCE by
Senator Cory Booker( D-NJ) addresses Forum attendees.
In March, 300 Parkinson’ s advocates from nearly all 50 states gathered in Washington, D. C., for the 2018 Parkinson’ s Policy Forum. This annual event brings together patients, care partners, scientists, legislative experts and lawmakers to discuss policy issues related to Parkinson’ s disease( PD) research and care.
In 2018, a virtual component was added to unite thousands of PD community members nationwide in conversation with their legislators. Parkinson’ s organizations from across the country came together to make the Forum possible. The event was co-hosted by The Michael J. Fox Foundation( MJFF) and the Parkinson’ s Foundation; nine other PD groups provided funding.
“ It’ s important that we work collaboratively as a community to advance our policy goals,” said Ted Thompson, JD, senior vice president, public policy, MJFF.“ When members of Congress make decisions about research funding or health care access, they affect every person with PD, so it’ s crucial that we use our collective voice to advocate together. By partnering with the Parkinson’ s Foundation and our other event supporters, we were able to amplify our message in Washington.”
SESSIONS SPOTLIGHT COMMUNITY NEEDS AND POLICY OPPORTUNITIES The first two days of the Forum consisted of a series of educational panels. Attendees learned about progress in the field of PD research; the
10 The Fox Focus
congressional landscape in 2018; recent policy changes that will increase patient access to care; and strategies to effectively advocate and build relationships with lawmakers. Several of these sessions were broadcast live on Facebook, garnering nearly 60,000 views.( Watch them now at facebook. com / michaeljfoxfoundation / videos.)
Senator Cory Booker( D-NJ) delivered a keynote address and spoke about how his late father, who lived with Parkinson’ s, showed him the meaning of courage and community. The senator also emphasized the importance of speaking out for people with PD and their loved ones, telling the advocates,“ What you do matters.”
Francis Collins, MD, PhD, director of the National Institutes of Health( NIH), who accepted an award for his efforts to speed Parkinson’ s research, told attendees about a number of NIH initiatives to advance disease understanding. Advocates Charles Brown, Kevin Mansfield and Leslie Peters also received awards, as did Congressman Gus Bilirakis( R-FL) and Walter Koroshetz, MD, director of the National Institute of Neurological Disorders and Stroke.