Breaking News: The National Plan to End Parkinson’s Act Passes the Senate, Moves to the White House

The U.S. Senate unanimously passed the “Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act” yesterday, the first-ever federal legislation dedicated to ending Parkinson’s disease and related conditions and specifically names progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).

The passage caps off a historic week of advocacy for CurePSP that came to fruition after years of dedicated support from the entire CurePSP community. CurePSP staff and volunteers attended a Brain & Environment Symposium in Washington DC on May 20, followed by CurePSP presenting at a congressional briefing on PSP hosted by Congresswoman Jennifer Wexton of Virginia. Colleagues then rallied around Rep. Wexton, who was diagnosed with PSP last year, as she led a bipartisan resolution to recognize May as PSP Awareness Month, receiving over 100 cosponsors and an outpouring of support on social media.

The week now closes with the Senate’s passing of the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act. Rep. Wexton has been a critical champion for this bipartisan, no-cost legislation that would create an advisory council comprised of federal agencies, patients, care partners, researchers, clinicians and other experts to coordinate federal efforts around the Parkinsonian diseases. She celebrated the news, a win for her family and many other families like hers, in a press release.

“With the Senate’s passage of the National Plan to End Parkinson’s Act, Congress has taken a groundbreaking step to fight Parkinson’s and atypical parkinsonisms to give families like mine hope that one day soon we can and will find a cure for these terrible diseases,” Rep. Wexton said. “This fight has become personal for me, and I’m proud to do all I can on behalf of the broader Parkinson’s community to deliver this major win.”

Dr. Kristophe Diaz, Executive Director and Chief Science Officer of CurePSP, in the same press release reflected on the numerous phone calls he receives every day from families who have just received a PSP diagnosis, and is proud to deliver them a fresh message of hope.

“This historic bill and the drive and courage of Rep. Wexton hold the promise of fostering the collaborations that are essential to advancing improved treatments and a cure and to provide better care for individuals living with Parkinson's and related neurodegenerative parkinsonism,” Dr. Diaz said. “This bill is a catalyst for action and is poised to transform hope into tangible progress.”

CurePSP and our partners in the Unified Parkinson’s Advocacy Council, led by the Michael J. Fox Foundation (MJFF), applauded the passing of the bill by the House of Representatives with a large margin and incredible bipartisan support in December 2023. The Senate version of the bill was assigned to the Senate Committee on Health, Education, Labor and Pensions in March 2023. On May 23, 2024, Senator Chuck Shumer of NY brought a request for a reading of the bill to the House floor, and it passed without amendment by Voice Vote.

Ted Thompson, MJFF’s Senior Vice President of Public Policy, said in a press release that “as we celebrate this moment, [we] express our gratitude to every grassroots advocate, partner organization and member of Congress who helped advance this bill.”

CurePSP is proud to have played a role in the advocacy for the National Plan to End Parkinson’s Act. In addition to organizing multiple virtual meetings with key Senate offices, our community members sent over 2,200 emails to their policymakers through our toolkit, describing the personal impacts of PSP, CBD and MSA and the gaps and opportunities in diagnosis, care and research. In Wexton’s congressional briefing earlier this week, the Congresswoman and representatives from both CurePSP and the MJFF emphasized the urgency of moving this bill forward. All three teams are overjoyed to see this moment come to fruition and CurePSP is grateful for the dedication and passion of each person who advocated alongside us.

The bill now heads to its final stop: President Biden's desk to be signed into law.

Now is a great time to thank Congress for their leadership in passing the National Plan! It is important that they hear directly about what their support means to you. Call your members of Congress from your phone. You can do this by:

1. Looking up your Representatives’ contact information here and your Senator’s contact information here.

2. Or, calling the U.S. Capitol Hill switchboard at 202-224-3121 and asking to be connected to the offices of your members of Congress.