Together, we can shape impactful policies, making our voices a force for change.
We need your help to pass the National Plan to End Parkinson’s Act! !
Together, we can shape impactful policies, making our voices and stories a force for change. CurePSP’s legislative advocacy efforts are centered around the primary goals of improving quality of life for people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) or multiple system atrophy (MSA) and finding a cure for the diseases. While CurePSP’s full public policy agenda is currently in development and will be available soon, there are steps you can take now to become an advocate for the PSP, CBD and MSA community.
Urge the Senate to support the National Plan to End Parkinson’s Act (S. 1064)!
This bipartisan legislation will create an advisory council to coordinate federal efforts around the Parkinsonian diseases and report annually to Congress on the progress made to end the diseases. PSP, CBD and MSA are specifically named in this bill, marking an extraordinary move in increasing awareness of and support for these otherwise often under-recognized diagnoses. The bill will unite the community and the federal government in a mission to prevent and cure the Parkinsonian diseases, alleviate financial and health burdens on families, and ensure those living with the disease have access to the care they need. It has to the potential to:
- Dramatically increase federal research funding;
- Develop more effective pathways for treatments and cures;
- Improve early diagnosis;
- Spark new and improved models for patient care;
- Create standards and measures to prevent Parkinson’s disease, PSP, CBD and MSA;
- Address health disparities in diagnosis, treatment and clinical trial participation; and
- Enhance public awareness of the diseases.
CurePSP is a member of the Unified Parkinson’s Advocacy Council, in collaboration with the Michael J. Fox Foundation, and together, we need YOUR help to urge members of Congress to support the National Plan to End Parkinson’s Act.
The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act (H.R. 2365) passed the House of Representatives on December 14, 2023 by a vote of 407 to 9!
In a press release, Congresswoman Jennifer Wexton of Virginia, who announced earlier in fall 2023 that she was diagnosed with PSP, said “I am thrilled that the House has come together today to take a transformative step to fight Parkinson’s and atypical Parkinson’s which would save lives and give families like mine hope.”
Now we need to turn our focus to advancing the bill in the Senate. CurePSP has been working closely with Wexton’s office on amplifying awareness of and impact for PSP and the other Parkinsonian diseases during the remainder of her term. We will continue to partner with her and her team in this next stage of advocacy.