Join Us in Advocacy

Together, we can shape impactful policies, making our voices a force for change.

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
  • 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!















How Change Happens: Resources for Effective Public Comments

Submitting a public comment puts your experiences and priorities on the official record and gives government decision makers an opportunity to hear directly from the PSP, CBD, and MSA community. Public comments don’t have to be long or complicated— click here to see examples of comments submitted to the Advisory Council before the August 2026 National Parkinson’s Project public meeting.

Whether you’re new to advocacy or looking for guidance, CurePSP has resources to help you get started: 

  • FAQ on Government Requests for Public Input: Click here to learn what public comments are, why they matter, and how to prepare and submit your perspective.
  • National Parkinson’s Project Comment Guide and FAQ: Get specific guidance here to share your experience and priorities with the Advisory Council on Parkinson’s Research, Care, and Services and ensure the perspectives of the PSP, CBD and MSA community are well represented in the national efforts.


    CurePSP Submits Public Comment on OMB Proposed Federal Grantmaking Rule

    CurePSP submitted public comments to the Office of Management and Budget (OMB) on a proposed rule that if finalized would be presumed to take effect this October, would make significant changes to how all federal grants and cooperative agreements are reviewed, awarded and managed. If finalized, the rule could affect the transparency, predictability and continuity of federally funded research, including on PSP, CBD and MSA.

    In its comments, CurePSP urged OMB to withdraw provisions to preserve rigorous scientific peer review, protect research continuity, maintain predictable funding pathways and support scientific progress towards new diagnostics and treatments for people living with PSP, CBD, MSA and related neurodegenerative diseases. The public comment period closed on July 13. We will update this space with any developments.

    Read our full public comment here.

    How you can help: Stay informed about federal policies that affect research and public health, share this issue with your network, and join CurePSP’s advocacy listserv to receive alerts and opportunities to take action on issues impacting the PSP, CBD and MSA community.


    Month of Awareness Resolutions and Proclamations

    State and municipal level resolutions or proclamations on PSP, CBD and/or MSA are a great way to raise awareness in a community. Use our toolkit to learn how about the process for introducing and passing one in your area!


    Ask Your U.S. Representatives to Cosponsor the May 2026 PSP & CBD Awareness Resolution

    For three years in a row, CurePSP has partnered with key House offices for a federal level PSP & CBD Awareness Resolution for the month of May. For 2026, we are excited to share that, for the first time, a Resolution was introduced in the Senate, by Sen. Richard Blumenthal, as a companion to the House Resolution introduced by Rep. Suhas Subramanyam! We need your help to grow support and attention in both chambers.

    FAQ on Government Requests for Public Input: Click here to learn what public comments are, why they matter, and how to prepare and submit your perspective.

    National Parkinson’s Project Comment Guide and FAQ: Get specific guidance here to share your experience and priorities with the Advisory Council on Parkinson’s Research, Care, and Services and ensure the perspectives of the PSP, CBD and MSA community are well represented in the national efforts.

    Email your Representative today       Email your Senators today


    Ask Your U.S. Representatives to Cosponsor the HEALTHY BRAINS Act

    CurePSP was recently on Capitol Hill for the re-introduction of the HEALTHY BRAINS Act, led by Rep. Bilirakis and Rep. Subramanyam, and now we need your voice to continue to move it forward! If passed, the Harmonizing Environmental Analyses and Launching Therapeutic Hubs to Yield Bolstered Research And Innovation in Neurological Science ("HEALTHY BRAINS") Act would boost vital research into the relationship between environmental toxic exposures and the development of neurodegenerative diseases like PSP, CBD and MSA.

    Email your policymakers today


    National Parkinson’s Project

    Back in 2023-2024, the CurePSP community sent over 2,200 emails to members of Congress, participated in numerous meetings with key congressional staff and supported our participation in a PSP congressional briefing held by former Rep. Jennifer Wexton, who lives with PSP, all to push forward the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act, legislation 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 (NPP). Read the full text of the bill here.

    Update:

    NPP Public Meetings

    • Submit Public Comment by October 26th
      • Public comments are accepted on an ongoing basis. To be shared with the Council comments must be received by October 26th by 5:00 p.m. ET.
      • Email your comment to: NationalPDplan@nih.gov
      • Please include the phrase “public comment” in both the subject line and the body of the message.



    Medicare Coverage for Telehealth

    Advocacy Win! Last month we sent out an action alert asking the CurePSP community to contact your members of Congress urging them to extend key telehealth flexibilities under Medicare ahead of the January 30th expiration date. You sent 634 emails using our toolkit - THANK YOU! Under the new Congressional appropriations bill that was passed by the House and signed into law on February 3rd, Medicare coverage for telehealth flexibilities has been extended for two years through December 31, 2027. While there is more work to be done to ensure longer-term virtual access to critical medical services, like neurologists, rehabilitation therapy and palliative care, we are proud that the voices of people impacted by PSP, CBD and MSA joined thousands of others through partner coalitions and organizations in this advocacy effort.


    Our Commitment to the PSP, CBD and MSA Community Amidst Federal Policy Changes

    During a time of deep uncertainty around the future of funding for neurodegenerative research and federal support programs, CurePSP is working hard to advocate for people with PSP, CBD and MSA, including their access to quality healthcare and hope for a cure.  Read our full statement here. 


    Advocacy Coalition Participation

    CurePSP is an active member of the American Brain Coalition, the Unified Parkinson’s Advocacy Council through the Michael J. Fox Foundation and the Cures Collective through I AM ALS, among other coalition efforts. Such key partnerships help us to achieve more powerful and cohesive messaging in the policy space and engage a broader audience so that, ultimately, we can more rapidly accelerate the improvement of diagnosis, care, research and awareness for the larger neurodegenerative disease community.

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


    Appropriations Report Language - Wins For Our Community!

    Language that CurePSP submitted was included in the House fiscal year 2027 Labor, Health and Human Services, Education and Related Agencies (LHHS) report - encouraging NINDS to develop research funding opportunities that specifically address the needs of those living with PSP and CBD. This was a primary "ask" of ours during the congressional briefing we held in March 2026 with former Congresswoman Jennifer Wexton, who lives with PSP, as well as during numerous meetings we held with key congressional offices in the spring.


    Learn More!