For families affected by Retinal Vasculopathy with Cerebral Leukoencephalopathy (RVCL), a rare, devastating genetic disease with no cure, progress means everything. Every scientific discovery brings new hope to families who have spent years living with uncertainty, waiting for answers.
Today, I'm honored to share that The Clayco Foundation is committing $10 million to support RVCL research at the University of Pennsylvania Perelman School of Medicine.
This investment will help advance a promising small-molecule degrader therapy through pre-clinical safety studies, an important step toward a future clinical trial. It represents one of the most significant commitments The Clayco Foundation has ever made, and one that is deeply personal to my family.
Ellen, my childhood sweetheart and wife of 25 years, passed away in 2010 after battling RVCL. Losing Ellen changed my life in ways I never could have imagined. It also gave my family a new purpose. Through The Clayco Foundation, we've remained committed to supporting research, advancing awareness, and helping bring hope to families facing this disease. What once felt impossible is beginning to feel within reach.
One of the greatest reasons for that optimism is the remarkable progress being made by Jonathan Miner, MD, PhD, Amanda Finck, PhD, and their team at Penn Medicine, working alongside Dr. Nouri Neamati and his team at the University of Michigan. Together, they have developed a promising therapy designed to help the body identify and eliminate the malformed TREX1 protein responsible for RVCL. Years of dedication, collaboration, and perseverance have brought the research to this point, and today, there is real momentum toward changing the future for families living with this disease.
There is still important work ahead, but every step forward matters. Every breakthrough brings us closer to the day when families facing RVCL have effective treatments and, ultimately, a cure.
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