Executive Director
TGCT Support/Life Raft Group
Sara is the Executive Director of The Life Raft Group with 20+ years of experience in the nonprofit sector. Under Sara's executive leadership, The Life Raft Group (LRG) has taken the model of supporting GIST patients and expanded it to diversify support for other rare diseases. Sara has also been at the forefront of leveraging technology such as AI and machine learning to enhance research through the development of a patient registry and tissue bank.
Sara has played a crucial role in launching in-person and virtual educational events for patients and their families over the past 20 years. She was part of a collaborative effort that supported the start of the first National Institutes of Health (NIH) in-person clinic for Pediatric GIST patients. She later expanded this effort by enabling medical professionals worldwide to convene and discuss challenging cases through the collaborative NIH/Life Raft Group Virtual Tumor Board program for Pediatric & Wildtype GIST patients.
Sara has spoken at numerous events as a key opinion leader in advocacy, such as Biden Cancer Summit which launched the Pediatric & SDH-Deficient GIST Consortium. This initiative aims to extend and sustain research efforts globally, with the ultimate goal of finding a cure through collaboration. This collaboration led to the Consortium receiving a 5-year NIH grant in 2024.
Sara is recognized as a globally respected patient advocacy leader who collaborates effectively with a diverse network of stakeholders, including medical key opinion leaders, fellow patient advocates, the pharmaceutical industry, and government authorities. Her passion for working with the patient community drives her dedication to supporting and educating patients about their health choices. Sara continually seeks and implements innovative strategies to help those living with rare cancers access life-saving treatments.