Urge Congress to support NIH research that impacts PSP, CBD and MSA

The below message will be sent to your members of Congress. While not required, please feel free to add a brief (recommended: no more than a few sentences) personal message to accompany it. Thank you for advocating with CurePSP! 

I am a member of the progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) community. PSP, CBD and MSA are rare, adult-onset neurodegenerative diseases with significant care burdens, no diagnostic biomarkers, no disease-modifying treatments or cures and an average life expectancy of 7 years from symptom onset.  

I am writing to urge you to prioritize fully funding the National Institutes of Health (NIH) in the Fiscal Year 2026 (FY26) appropriations to at least $51.303 billion to ensure that critical research on rapidly progressive neurological diseases continues. This amount would allow the agency’s budget to keep up with inflation and promote meaningful growth of approximately 6%, expanding NIH’s capacity to conduct and support medical research, including lab-based and clinical studies that will lead to prevention, accurate diagnosis, effective treatments, improved access to comprehensive care, and, ultimately, cures for PSP, CBD, MSA and other neurological diseases.  

Largely due to federally-supported research at NIH, we have made important strides in understanding why people develop these conditions and how to best treat them. To share a few current examples of NIH programs that impact our disease community: 

• After a groundswell of bipartisan support, the National Parkinson’s Project was signed into law in July 2024. This law will coordinate federal efforts around preventing and treating the Parkinsonian diseases, including PSP, CBD and MSA. The advisory council will be housed under NIH.  
• The PSP platform trial, led by the University of California San Francisco, in partnership with CurePSP and 50 medical institutions across the country, will test three drugs concurrently for PSP. The trial is made possible by a five-year grant of up to $75.4 million from the National Institute on Aging. 
• The Parkinson's Disease Biomarkers Program, offered through the National Institute of Neurological Disorders and Stroke, was developed to accelerate the discovery of promising new diagnostic and progression biomarkers for Parkinson's disease, dementia with Lewy bodies, PSP, CBD and MSA.  

Any disruptions and reductions to research funding and infrastructure could have long-term, devastating impacts for the advancement of science on PSP, CBD and MSA, and, ultimately, the quality of life of those in our community. Please ensure that the critical research on rapidly progressive neurological diseases continues by fully funding the NIH in FY26 appropriations at $51.303 billion. Thank you!