Jill Levy-Fisch began her journey to advocacy when she learned comprehensive newborn screening could have identified her youngest son’s rare medical condition, thereby avoiding what became a three-year diagnostic odyssey. Her efforts to speak up for him led her to speak up for the lives of other children. In 2003, Jill became an active volunteer member of Save Babies Through Screening Foundation (SBTS), an education and advocacy-focused not-for-profit supporting comprehensive newborn screening for all children.
She became National Director of Education and Awareness for the organization in 2004 and two years later she took on her current role as President. At SBTS, Jill was instrumental in the writing and enactment of the Newborn Screening Saves Lives Act of 2007, and she spearheaded work that led the Secretary of Health & Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) to issue a letter recommending education and awareness about newborn screening for all parents.
Jill served for five years on the ACHDNC Treatment and Follow-up Subcommittee and was a long-time advisor to the New York Mid-Atlantic Regional Collaborative (NYMAC). Recently Jill was named the Vice Chair of the Northwest Regional Newborn Screening Bloodspot Advisory Committee. She is an executive producer of several educational films about newborn screening that have been translated into multiple languages and are in use worldwide and co-produced an educational video for the Newborn Channel.
She has also co-authored several articles published in peer-reviewed journals including Pediatrics and has spoken about newborn screening advocacy at international conferences in Morocco and Tanzania. Jill is a dedicated mother of three and lives in Westchester, NY with her husband of thirty years, Peter.