Director of Rare Disease Advocacy

Sarah completed her undergraduate studies at Princeton University, MD at Vanderbilt University, and pediatric residency at Boston Children’s Hospital (with Ann). After 15 years of pediatric clinical practice, when her child was diagnosed with Wolfram syndrome, she began working with Wolfram syndrome researchers and parents to facilitate communication and help find a treatment for Wolfram syndrome.  Sarah started the Unravel Wolfram Syndrome Fund to support WS research, and founded the Wolfram Syndrome Research Alliance to help connect WS researchers and clinicians. Currently, she is the Chief Scientific Officer at the Snow Foundation for Wolfram Syndrome Research and provides ongoing support for people with Wolfram syndrome and their families. As the parent of a child with Wolfram syndrome she understands first-hand the benefits of genetic testing for pediatric patients and pediatricians.