#United States #Washington #CurePSP #PSP #MSA

CurePSP Organizes Bipartisan Congressional Briefing

In March 2026, CurePSP convened a significant congressional briefing attended by key lawmakers, scientists, and individuals affected by progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). This critical event showcased the urgent need for research into these debilitating neurodegenerative diseases and emphasized the importance of bipartisan support in addressing these challenges.

Among the notable attendees were Representatives Subramanyam (D-VA) and Bilirakis (R-FL), who both pledged their commitment to advancing research and resources for the approximately 30,000 Americans living with PSP. The event served not only as a information sharing forum but also as a heartfelt platform for those affected by these conditions to share their experiences and struggles.

Former Representative Jennifer Wexton, who has personally dealt with PSP, noted, "I used my remaining time in Congress to raise awareness about what the 30,000 Americans with PSP, like myself, deal with, and the resources we need from our government." Her efforts contributed to the historic National Plan to End Parkinson's Act, marking a critical step for legislation that encompasses PSP, CBD, and MSA for the first time.

The briefing also featured stories from advocates and experts, shedding light on the emotional, physical, and financial toll these diseases take on families. Representative Leger Fernández (D-NM) shared her family's experience with PSP, expressing the dire need for increased federal funding for research and better diagnostic resources. "When my mother-in-law was diagnosed, our family felt lost. Witnessing Rep. Wexton’s address gave us hope and clarity," she revealed.

One of the primary advocacy goals discussed during the briefing was the passage of the HEALTHY BRAINS Act. This legislation aims to secure increased funding for atypical parkinsonian diseases, which significantly impacts the quality of life for those affected. Representative Wexton, who has seen firsthand the rapid progression of her condition, emphasized that the personal could very well become political. "If this can happen to me, it can happen to anyone. We need to advocate and push for more funding and research to advance treatment options."

The briefing concluded with an appeal from Rep. Subramanyam, who highlighted the urgency in finding answers and solutions for those diagnosed with PSP and similar conditions. "Hearing Jennifer Wexton's story grounds us all in the reality of these diseases. While they may be rare, the urgency to understand and treat them is paramount," he stated.

CurePSP, as a leading nonprofit organization, remains dedicated to enhancing education, care delivery, and quality of life for individuals with PSP, CBD, and MSA. By fostering important partnerships and supporting innovative research, CurePSP strives to catalyze progress towards better treatments and, ultimately, a cure.

Through efforts like this congressional briefing, CurePSP reinforces its mission to act as a beacon of hope for those affected by these challenging diseases, emphasizing the pivotal role advocacy and awareness play in driving change within the healthcare landscape. As stakeholders continue to rally together, the collective aim is clear: a future where neurodegenerative diseases no longer leave families in despair but are met with comprehensive research and effective treatment solutions.