Every year on February 28th, the world comes together to recognize Rare Disease Day—a day dedicated to raising awareness and driving meaningful change for the 300 million people living with rare diseases. But for my family, this mission is deeply personal. 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 genetic condition. Her journey shaped my unwavering commitment to supporting research, advocacy, and patient care, and it continues to inspire the work we do through The Clayco Foundation.
RVCL is an ultra-rare disease that affects the small blood vessels in the brain, leading to vascular dementia and a host of other devastating symptoms. Because it mimics other conditions and is widely unknown, misdiagnosis is common, and treatment options are still limited. This is why we’ve made it our mission to fund the incredible work being done by researchers and physicians who are relentlessly pursuing a cure.
Dr. Jonathan Miner and his team at Penn Medicine’s RVCL Research Center have made significant strides in understanding this disease. Their groundbreaking research and collaborations with scientists worldwide are bringing us closer than ever to personalized therapies that could transform lives. Thanks to generous donors and supporters, events like The Clayco Foundation’s annual Illumination gala have raised millions of dollars (over $10 million, to be exact!) to fuel these advancements, offering hope to families who are navigating the uncertainty of a rare disease diagnosis.
Beyond funding research, we also believe in the power of creating spaces that provide comfort and inspiration. The Ellen S. Clark Hope Plaza, designed by the renowned architect Maya Lin, stands as a testament to Ellen’s legacy—a place of peace and reflection at Washington University Medical Center, a leading institution in rare disease research. Ellen saw this plaza completed before she passed, and it remains a powerful reminder of the impact one life can have on so many.
I constantly strive to venture beyond these walls to ensure that science and technology are leveraged to improve lives. Rare Disease Day serves as an important rallying point, but our work continues EVERY day. We must keep offering support and resources to develop personalized treatments and drive the innovation needed to give every patient a chance to live a longer, healthier life.
Let’s use this moment to push for continued advancements in research, technology, and care—because the fight against rare diseases is one we must win together.
