Together, we can shape impactful policies, making our voices a force for change. Thank you for being an advocate with CurePSP!

Advocacy priorities

In 2024, over 200 CurePSP community members completed an online survey helping us to identify important advocacy priorities. Thanks to your guidance, our advocacy agenda will focus on addressing:

• Access to and affordability of medical care
• Support for family care partners
• Creation of a Congressional caucus that specifically focuses on PSP, CBD and MSA
• Improved diagnostics for PSP, CBD and MSA
• Studies looking at the etiology and/or epidemiology of PSP, CBD and MSA

Check back here for opportunities to take action in support of CurePSP’s legislative agenda!

National Plan to End Parkinson’s Act

We asked for your help to pass the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton Plan to End Parkinson’s Act and the CurePSP community came through! You sent over 2,200 letters to your members of Congress, participated in multiple meetings with key congressional staff, supported us through our congressional briefing with over 50 staffers in attendance and spread the word to your networks about this bill that will coordinate federal efforts around preventing and treating the Parkinsonian diseases, including PSP, CBD and MSA.

After a groundswell of bipartisan support in both the House and Senate, the bill was signed into law by President Biden on July 2, 2024. It is now called the National Parkinson’s Project. Read the full text of the bill here.

Update February 2025: The U.S. Department of Health and Human Services Secretary announced it would be delegating the authority vested in the HHS under the Act to the National Institutes of Health. The next step is the formation of an advisory council.

Continue to monitor this space, our social media and newsletters for updates as we track the work that is done as a result of this bill!

Advocacy Coalition Participation

Among other advocacy-related coalition memberships, CurePSP is an active member of the Unified Parkinson’s Advocacy Council through the Michael J. Fox Foundation and the Cures Collective through I AM ALS. Such key partnerships allow us to identify gaps, reduce duplication and silos, increase effectiveness and unlock critical breakthroughs around advocacy efforts relevant to PSP, CBD, MSA and the larger neurodegenerative disease communities.

If you want more information or have questions about getting involved, contact info@curepsp.org

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