CurePSP and Congresswoman Wexton collaborate on congressional briefing on progressive supranuclear palsy
NEW YORK, June 4, 2024 /PRNewswire/ -- CurePSP was on Capitol Hill on May 21st for a briefing focused on progressive supranuclear palsy (PSP). Often initially diagnosed as Parkinson's disease, PSP is a quickly progressive neurological condition with similar prevalence as amyotrophic lateral sclerosis (ALS). Fifty congressional staffers were in attendance.
Since September 2023, Congresswoman Jennifer Wexton of Virginia has spoken about her PSP diagnosis on the House floor and publicly, relying on text-to-speech technology due to the disease's impact on her communication abilities.
"During the briefing, Congresswoman Wexton and CurePSP representatives described the symptoms and personal impacts of PSP," said Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP. "This has brought unprecedented awareness to a diagnosis that is often unheard of among policymakers and the public alike."
The Michael J. Fox Foundation for Parkinson's Research (MJFF), one of CurePSP's key advocacy partners, urged support from Congress for the National Plan to End Parkinson's Act, a bipartisan bill that will coordinate federal efforts around the Parkinsonian diseases, including PSP. It passed the Senate two days later and awaits President Biden's signature to become law.
"MJFF is appreciative of Congresswoman Wexton and CurePSP's leadership and collaboration to advance critical legislation to support people with Parkinson's and PSP," said Mason Zeagler, Government Relations Officer at MJFF.
The briefing also focused on gaining cosponsors for a resolution to recognize May as PSP Awareness Month.
"It is crucial to educate on the care gaps and research opportunities for PSP," said Dr. Alex Pantelyat of Johns Hopkins University. "I'm glad we can move the needle forward towards policies that will bring us closer to effective treatments and a cure."
About CurePSP:
CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, CurePSP establishes important partnerships and funds critical research internationally. Through its advocacy and support efforts, CurePSP enhances education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of CurePSP's mission and all its services. CurePSP is a registered 501(c)(3) charity within the United States (EIN: 52-1704978).
Contact:
Kristophe Diaz, PhD
Executive Director and Chief Science Officer
646-725-1453
[email protected]
SOURCE CurePSP, Inc.
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