Board of Directors
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 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 screening for all parents. Jill served for five years on the ACHDNC Treatment and Follow-up Subcommittee and is a long-time advisor to the New York Mid-Atlantic Regional Collaborative. She is an executive producer of several educational films about 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 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.
Since then, Sarah has worked tirelessly to speed up screening test results. In 2013, Noah’s story was featured in an investigative journalism series from the Milwaukee Journal Sentinel called “Deadly Delays,” which influenced a change in federal law in 2014 via the Newborn Screening Saves Lives Reauthorization Act. The bill’s language emphasized timely screening test results. National best practice guidelines for timely tests were created, and Sarah helped influence what was included.
She also helped update Colorado’s screening law in 2018. The Colorado Newborn Screening law now makes sure the state lab stays open a minimum of six days a week regardless of weekends or holidays, brings the state into compliance with national guidelines by adding additional rare diseases the test screens for and creates funding and a far more structured program for hearing tests, among other things.
Sarah continues to work towards comprehensive and timely screening tests across the country. She and her husband Chris have two younger children.
After medical school at Duke, and following four years at the National Institutes of Health, he was named the Joseph P. Kennedy Jr. Scholar in Mental Retardation and Associate Professor of Pediatrics at the Johns Hopkins University School of Medicine. Dr. Howell was the then David R. Park Professor and Founding Chairman of Pediatrics at the University of Texas Medical School at Houston, and later Chair of Pediatrics at the University of Miami, Miller School of Medicine. He is an elected Fellow of the American Association for the Advancement of Science.
He is the author of over 175 original articles, numerous abstracts and other material dealing with serious genetic diseases in childhood. Recent work has focused on screening. He has received the William G. Anlyan Lifetime Achievement Award from the Duke University Medical Alumni Association, the Lifetime Achievement Award of the American College of Medical Genetics Foundation in 2012, and the Lifetime Achievement Award in Genetics from the March of Dimes. In 2015, he was the first recipient of the Advocacy Award from the American Society of Human Genetics for his excellence and achievement in applications of human genetics for the common good.
In 2013, in commemoration of the 30th anniversary of the Federal Rare Disease Act, the United States FDA named him one of the 30 Rare Disease Heroes.
Dr. Howell was founding Chair of the U.S. Congressionally-mandated Secretary’s Advisory Committee of Heritable Disorders in Newborns and Children (2004-2011), the committee that advises the Secretary of HHS on issues concerning genetic testing in children. This committee oversaw development of the Recommended Uniform Newborn Screening Panel in the United States.
Dr. Howell is the immediate Past President of the International Society of Neonatal Screening, based in the Netherlands.
For more than 30 years, Dr. Howell has served the Muscular Dystrophy Association (MDA). He was first a member of the Medical Advisory Committee and then Chairman of the Scientific Advisory Committee. Dr. Howell was Chairman of the MDA Board of Directors from 2007-2020.
