Piper's Kidney Beans Foundation
Hospital/Clinic - N/A, N/A, US
Piper's Kidney Beans Foundation Employees
Piper's Kidney Beans Foundation Senior Management
Piper's Kidney Beans Foundation Details
This foundation is named after our daughter, Susan Piper Lee, who was diagnosed, via genetic testing, with Denys-Drash Syndrome. Denys-Drash is a genetic illness that causes kidney failure and the development of Wilms tumor at a median age of 18 months. Thanks to the quick thinking of Piper's doctors at A.I. duPont Hospital for Children, Piper was diagnosed early and has since received a successful kidney donation and a significantly reduced risk of developing cancer. Although Piper was diagnosed early, it was still a challenge to get the genetic testing done quickly as the closest genetic testing lab that could offer the necessary tests is based in Bristol, England.It is our belief that ALL children should have access to a domestic genetic testing lab which can potentially identify genetic illnesses early and affordably As such, our goals are to: 1) Raise the necessary funding for the creation of a comprehensive next generation genetic sequencing panel for steroid-resistant nephrotic (kidney) syndrome at the A.I. duPont Hospital for Children2) Raise funding for the purposes of subsidizing the costs of genetic testing for nephrotic disease in children whose families cannot afford it.3) Help fund research to prevent the need for multiple kidney transplants in children and promote awareness around Rare Disease in general so all children can have a better life.
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