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

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

• Improved diagnostics for PSP, CBD and MSA

• Studies looking at the etiology and/or epidemiology of PSP, CBD and MSA

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!

Advocacy Win! Medicare Coverage for telehealth

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.

CurePSP’s 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.

July 31, 2025 - Exciting News!

Language that CurePSP submitted was included in the Senate fiscal year 2026 Labor, Health and Human Services, Education and Related Agencies (LHHS) report – urging the National Institute of Neurological Disorders and Stroke (NINDS) to specifically include PSP, CBD and MSA in programmatic initiatives, data efforts and strategic planning focused on neurodegenerative diseases. This is a key step forward and a big win for our community – thank you to the Senate LHHS Committee and all who supported our request. 

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:

In early 2025, the U.S. Department of Health and Human Services Secretary delegated the authority vested in the HHS under the Act to the National Institutes of Health (NIH). On April 10th, NIH's National Institute of Neurological Diseases and Stroke announced the full membership of the NPP Advisory Council on Parkinson's Research, Care and Services, which includes CurePSP's Director of Clinical Affairs and Advocacy! Read our press release with more details here.

Visit NIH's website to see the full membership and learn more. You can also watch the Council's inaugural meeting on Monday, June 29th 10:00am-4:00pm ET, which will include time dedicated to public comment.

Continue to monitor this space, our social media and newsletters for updates as we track and share the progress from the Advisory Council.

Advocacy Coalition Participation

Among other advocacy-related partnerships, 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. 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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