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 .