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U.S. Representative Suhas Subramanyam and U.S. Senator Richard Blumenthal introduced a bipartisan resolution on May 21 designating May as Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) Awareness Month, aiming to increase awareness and support research for the rare neurodegenerative diseases.
“PSP is a heartbreaking condition that impacts thousands of Americans, including my dear friend and mentor Congresswoman Wexton. We must support vital research into PSP and CBD so that we can get answers for patients and ultimately find a cure. One way to make sure that happens is to bring awareness to this neurodegenerative disease and our resolution does just that,” Rep. Subramanyam said on the House floor this week.
“This resolution honors not only the brave individuals living with Progressive Supranuclear Palsy and Corticobasal Degeneration but also their caregivers and the medical professionals working to prevent, treat, and ultimately cure these diseases. I am inspired by the strength and courage of those impacted by PSP and CBD, and I look forward continuing to support efforts to improve access to care and bolster the quality of life for Americans living with these diseases,” Senator Blumenthal said.
The bipartisan resolution has received support from 25 House co-sponsors.
According to a statement from Rep. Subramanyam’s office, PSP is a neurodegenerative disease caused by the harmful buildup of a protein called tau in the brain. The condition affects areas of the brain responsible for speech, balance, coordination, and eye movement, significantly impacting patients’ quality of life and life expectancy. Most individuals diagnosed with PSP become dependent on caregiving support within three to four years.
“Having a House PSP Awareness Resolution for a third year in a row is a testament to the movement that Rep. Jennifer Wexton started, and adding CBD to it this year is an opportunity to shed light on a closely related but even rarer disease,” said Jessica Shurer, MSW, LCSW, director of Clinical Affairs and Advocacy at CurePSP. “To say that living with or caring for someone with PSP or CBD is life-changing is an incredible understatement, but our community perseveres. Progress in earlier diagnosis, breakthroughs in research, broader public recognition, and more comprehensive care for these diseases starts by people with lived experiences feeling empowered to share their stories and needs. We are grateful for partners and champions like Rep. Subramanyam for elevating their voices and visibility.”
The statement noted that despite affecting more than 30,000 individuals and their families, PSP remains largely unknown to the public. While experts believe the disease is as common as amyotrophic lateral sclerosis (ALS), it has not received comparable levels of public recognition or research funding. Currently, there are no known disease-modifying treatments or a cure for PSP.
Congressman Subramanyam’s resolution seeks to increase public awareness, encourage scientific research, and support efforts to find effective treatments and a cure for PSP and CBD.
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