More than 300 Parkinson’s disease experts and advocates from across the United States will discuss critical needs in research and public policy at a Parkinson’s Policy Forum in Washington, March 19-21.
The Parkinson’s Foundation and the Michael J. Fox Foundation for Parkinson’s Research (MJFF) are sponsoring the initiative. Its goal is to give patients, advocates and research and policy experts tools to develop skills for effective public policy advocacy before they meet with their senators and representatives on Capitol Hill.
There will be two threads to the three-day event. During the first two days, March 19 and 20, attendees will be updated on the latest scientific developments in Parkinson’s and related legislation efforts, including eliminating the Medicare therapy cap, which the community has been pushing for years.
Then, on March 21, forum delegates will have meetings to educate members of Congress on the needs and priorities of the Parkinson’s disease community — particularly federal research funding.
“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,” Todd Sherer, the chief executive officer of the MJFF, said in a press release. “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.”
Discussions will focus on three main topics: the National Neurological Conditions Surveillance System, an initiative of the Centers for Disease Control and Prevention; the National Institutes of Health, as the largest funder of Parkinson’s research; and the Congressionally Directed Medical Research Program for Parkinson’s disease — a Department of Defense-funded program that investigates the military service-related links to Parkinson’s disease.
Momentum in Parkinson’s research is at an all-time high. In recent years, there have been more drug candidates entering clinical trials than ever before. A cure has not yet been found, however, and current therapies have limitations.
So Parkinson’s advocate say it is imperative that lawmakers are made aware of the latest developments and remaining needs. This will allow federal investments to focus on the most important steps to meeting the needs and to support 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, chief executive officer of the Parkinson’s Foundation. “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.”
Co-sponsored by the Parkinson’s Foundation and MJFF, the event is supported by nine other Parkinson’s organizations across the nation.
https://parkinsonsnewstoday.com/2018/03/12/parkinsons-advocates-to-tell-congress-about-research-and-care-needs/
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