NEW YORK (March 5, 2018) — The Parkinson’s Foundation and The Michael J. Fox Foundation for Parkinson’s Research (MJFF) will convene more than 300 advocates from across the United States, along with leading experts in Parkinson’s research, public policy and advocacy, on March 19–21 in Washington, D.C. for the 2018 Parkinson’s Policy Forum. The event is also supported by nine other Parkinson’s organizations across the country. This powerful advocacy event invites people with Parkinson’s disease (PD) — which affects nearly 1 million individuals across the country — to share their stories of the personal impact PD has made on their lives and the lives of their loved ones.
Forum delegates, primarily people with Parkinson’s disease, their families and care partners, will receive tools to develop and hone their skills for effective public policy advocacy as they prepare to meet with their senators and representatives. During the event’s first two days of training, attendees will hear from scientific and policy experts at the Parkinson’s Foundation and The Michael J. Fox Foundation on the latest developments in PD research. Panelists also will highlight recent legislative action to increase access to health care services, including the elimination of the Medicare therapy cap, which advocates worked for many years to remove.
The third and final day of the event will focus on congressional outreach. Advocates will conduct meetings on Capitol Hill to educate members of Congress on the needs and priorities of the PD community. Specifically, they will speak about the need for increased federal research funding for the following federal programs and agencies:
- Centers for Disease Control and Prevention’s National Neurological Conditions Surveillance System, which will collect vital patient demographic information to help researchers refine and target their work;
- National Institutes of Health, the largest public funder of Parkinson’s research; and
- Department of Defense Congressionally Directed Medical Research Program for Parkinson’s disease, the only government-funded research program specifically dedicated to Parkinson’s, which investigates the military service-related links to PD.
Momentum in PD research is strong. In recent years, there have been more drugs enter clinical testing than ever before. However, there is no cure to slow or stop disease progression, and current therapies are limited in their ability to address symptoms over time. Age is the greatest risk factor for Parkinson’s. As the population grows older, the need for new and improved treatments will become even more urgent. It is critical that lawmakers address this by increasing federal investments in medical research, as well as supporting policies that preserve and expand access to care.
“People with Parkinson’s disease should be able to live the fullest life possible, and that means securing commitments to federal programs that support them and their families,” 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. Parkinson’s advocates are some of the most passionate voices you’ll hear on these issues, and we want to ensure that they continue to have a seat at the table with lawmakers,” he added.
“The Parkinson’s Policy Forum is an annual event for people with Parkinson’s and their families, care partners, and friends who are interested in public policy advocacy. Scientific discovery at the federal level leads to new treatments and cures for countless individuals living with chronic conditions, including Parkinson’s. As the largest nonprofit funder of Parkinson’s research, The Michael J. Fox Foundation exists to leverage this federal investment in basic science and see that scientific breakthroughs are carried across the finish line,” said MJFF CEO Todd Sherer, PhD. “As more individuals are diagnosed with Parkinson’s, the urgent need for new therapies will continue to grow. Increased investments, from both the public and private sectors, are needed to accelerate results for patients and their families.”
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. For more information, visit us on the Web, Facebook, Twitter, LinkedIn and Pinterest.
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.