Almost a million people in America have Parkinson’s but a group of 11 influential organisations believe funding for research into the disease is woefully short.

Next week they will convene in Washington D.C. and share their ideas and concerns with elected government officials.

The Parkinson’s Foundation, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and nine other Parkinson’s organisations will join leading Parkinson’s experts and advocates at the 2019 Parkinson’s Policy Forum.

“Policy and research must work hand-in-hand to speed scientific breakthroughs for patients and their families,” said MJFF CEO Todd Sherer. “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 mobilise 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.”