Heather joined the TSC Alliance in November 2024, having worked with families with TSC and other genetic conditions for more than 25 years. Heather received her bachelor’s degree in Genetics from the University of Wisconsin-Madison and her master’s degree in Genetic Counseling from the University of Colorado Anschutz Medical Campus. Her previous experience includes being the Director of Clinical Programs at the Children’s Tumor Foundation, a nonprofit organization dedicated to neurofibromatosis (NF) and schwannomatosis. She worked with more than 70 clinics in the NF Clinic Network throughout the United States and Canada and was the leader and liaison for the Clinical Care Advisory Board with a collaborative goal of increasing access to quality care. She brings extensive experience developing educational and networking programs for families and clinicians and has created several patient-focused resources. Research interests and publications include the transition of individuals from pediatric to adult care and the disclosure of a diagnosis to children.
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