Parkinson’s Advocates Set to Lobby US Lawmakers for Greater Research Support, Patient Assistance

Joined by leaders in Parkinson’s (PD) research and public policy, some 150 patients and advocates from across the nation will gather in Washington, D.C., on Monday for the 2019 Parkinson’s Policy Forum.

The annual advocacy event, taking place Sept. 9–10, is presented this year by the Parkinson’s Foundation and The Michael J. Fox Foundation for Parkinson’s Research (MJFF), with support from nine other organizations. With the aim of improving the impact of policy on PD research and care, the forum offers an opportunity for those living with Parkinson’s to not only connect, but to share their journey with elected officials.

”Policy and research must work hand-in-hand to speed scientific breakthroughs for patients and their families,” Todd Sherer, PhD, the Fox foundation’s CEO, said in a news release. “The Parkinson’s Policy Forum brings the community together to advocate for government policies that support research and care. Its goal is to improve quality of life for everyone impacted by the disease today.”

Forum attendees — mostly patients and care partners — will spend a full day with foundation and its scientific and policy experts brushing up on effective advocacy, and exploring ways to help shape their message. They’re off to Capitol Hill the next day, where advocates will apprise legislators of the ways in which policy can help — or hinder — Parkinson’s research and care. They’ll focus specifically on the economic burden of PD, as well as recent legislative moves to limit out-of-pocket prescription medicine costs for Medicare patients, and improve access to mental health services.

The nonprofit organizations said it’s vital that advocates and policymakers seize on current momentum in Parkinson’s, particularly in research and clinical drug testing. By next year, it is estimated that nearly 1 million U.S. residents will be living with the progressive disease.

”People with Parkinson’s disease and their families need legislative action with increased federal research funding to expand access to care that will help patients live healthier lives,” said John Lehr, CEO of the Parkinson’s Foundation. “The Parkinson’s Foundation leverages our nationwide network of healthcare professionals and research advocates to mobilize around PD community policy priorities. To better serve people with Parkinson’s and their families we must ensure they continue to have their voice heard by lawmakers.”

Visit this site for more forum information.