The Foundation in Action
Over the past year, The Clayco Foundation has been diligent about supporting research and clinical efforts related to furthering RVCL understanding and the path towards treatment. This includes funding academic researchers and supporting families dealing with the realities of an RVCL diagnosis and continual care. The costs can add up from doctor visits, lab tests, blood work, related travel, and beyond. The Foundation routinely steps in when possible to help support those that fit within our categorical mission and reach out to us. If you are dealing with RVCL or know someone that is, and the burden of medical costs is impeding timely care…please reach out to us today!
“I am incredibly blessed and grateful for the financial support of the Clayco Foundation! Having such an amazing organization supporting this cause brings me hope that great things are happening! I cannot thank them enough for everything they have done for my family and me!”
– Sarah Parsons
A Philly-area woman’s medical mystery leads to a diagnosis shared by only 43 families worldwide
Barbara Small was a pediatric nurse at Children’s Hospital of Philadelphia, enjoying her work, her family and traveling with her husband. At the age of 59, she was involved in a cycling accident and required hip surgery soon after. A week after returning home, her vision became blurry which lead to a series of appointments and misdiagnosis over a four-year period.
In January 2018, almost four years after her first symptoms, her neurologist sent Small for genetic testing, which lead to the discovery that she carried the TREX 1 gene mutation and was diagnosed with RVCL.
The Philadelphia Inquirer published an article sharing Barbara’s story and sheds light on this extremely rare, inherited disease.