Executive Director
Clear Cell Sarcoma Foundation
Co-founder of the Clear Cell Sarcoma Foundation (CCSF -formerly Sara's Cure) and mom to two girls diagnosed at the age of 17 with 2 different cancer types and no known genetic link. I am a Charleston SC native and earned a BS from the College of Charleston. When our family was told there is no treatment and a poor prognosis for CCS patients we had to do something to change that. in 2018 after my daughter's CCS returned, along with the help of our community and good friends, the CCSF was founded. Through research and patient advocacy work I have come to know dozens of CCSF patients and families that have a common goal of sharing their lived experiences with each other for a chance at better and longer living. I, along with the CCS family, helped fund repurposed drug testing and helped to successfully concluded a patient/pharma partnered phase 1 trial of a combination treatment. We continue to guide patients that want to donate tissue for research and enroll in a clinical grade registry EHR platform.
