Advocates from the Parkinson’s Community Unite on Capitol Hill to Urge for Critical Research Funding
2019 Parkinson’s Policy Forum Co-Sponsored by the Parkinson’s Foundation and The Michael J. Fox Foundation for Parkinson’s Research
NEW YORK (September 3, 2019) — The Parkinson’s Foundation and The Michael J. Fox Foundation for Parkinson’s Research (MJFF) will convene more than 150 advocates from across the United States, along with leading experts in Parkinson’s research, public policy and advocacy, on September 9 – 10 in Washington, D.C. for the 2019 Parkinson’s Policy Forum. The event is also supported by nine other Parkinson’s organizations across the country. This dynamic advocacy event invites people with Parkinson’s disease (PD) — which affects nearly 1 million individuals across the country — to unite and share their personal journey with PD with elected officials to improve the ways policy impacts research and care.
“Policy and research must work hand-in-hand to speed scientific breakthroughs for patients and their families,” said MJFF CEO Todd Sherer, PhD. “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, primarily people living with Parkinson’s disease, their families and care partners, will receive tools to promote and hone their skills for effective public policy advocacy as they prepare to meet with their senators and representatives. The event includes a full day of training attendees through discussions with scientific and policy experts at the Parkinson’s Foundation and The Michael J. Fox Foundation. Panelists also will highlight recent legislative action to cap high out-of-pocket drug costs and increase access to health care services, including the Mental Health Access Improvement Act of 2019.
The final day of the event will focus on congressional outreach. Advocates will attend meetings on Capitol Hill to educate members of Congress on Parkinson’s and the ways policy impacts research and care. Specifically, they will speak about the need for an out-of-pocket cap on prescription drug costs for Medicare, as well as increased access to mental health care services.
There is continuous unprecedented momentum in Parkinson’s research. In recent years, industry interest in Parkinson’s has grown and there have been more drugs entering clinical testing than ever before. It is critical that policymakers push for policies favorable to Parkinson’s research and care.
“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.”
About The Michael J. Fox Foundation for Parkinson’s Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $800 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
About the Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. Since 1957, the Parkinson’s Foundation has invested more than $400 million in Parkinson’s research and clinical care. Connect with us on Parkinson.org, Facebook, Twitter, Instagram or call (800) 4PD-INFO (473-4636).
About Parkinson’s Disease
Affecting an estimated one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the U.S. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the U.S. alone.