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Ellen, my childhood sweetheart and wife of 25 years, passed away in 2010 after being diagnosed with Retinal Vasculopathy with Cerebral Leukoencephalopathy (RVCL), a rare and devastating genetic disease. Her journey changed the course of my life and shaped my lifelong commitment to supporting research, advocacy, and patient care. Through The Clayco Foundation, we have made it our mission to fuel hope where once there was only heartbreak.

RVCL is an ultra-rare disease that attacks the small blood vessels in the brain and other organs, leading to vascular dementia and other serious complications. Because it mimics more common conditions and remains largely unknown in the medical community, misdiagnosis is frequent, and treatment options remain limited. For families, that uncertainty is one of the hardest parts, living between questions and few answers.

But today, we have reason to believe that is changing.

Thanks to the groundbreaking work of Dr. Jonathan Miner and his team at the University of Pennsylvania’s RVCL Research Center, in collaboration with Dr. Nouri Neamati and his team at the University of Michigan, the world now has two promising drug candidates that can target and neutralize the mutant protein behind RVCL. This is a scientific breakthrough that many once thought impossible.

This progress was made possible through private funding, grassroots advocacy, and the determination of families and researchers who refused to give up. Every dollar raised, every conversation started, and every story shared made a difference.

Through events like The Clayco Foundation’s annual Illumination Gala, our community has raised over $12.4 million and counting to drive this research forward. That funding has helped accelerate discoveries and bring researchers closer to real treatment options for RVCL. It’s progress built on persistence, generosity, and an unwavering belief that answers are possible.

As I reflect on Ellen’s legacy, her life continues to inspire this mission: to turn loss into hope, to support the brilliant minds searching for answers, and to ensure that no family has to walk this road alone.

Let us keep pushing. Let us keep believing. The fight against rare diseases is one we can and must win together.