Lesa Brackbill | Director of Advocacy
Leukodystrophy Newborn Screening Action Network

Lesa Brackbill is a wife, mother, author, and advocate. She and her husband Brennan became involved with Krabbe-related advocacy when their daughter Victoria was diagnosed with Krabbe Disease in 2015. Using her knowledge and experience, Lesa helped to reform the Newborn Screening (NBS) program in Pennsylvania, making the program stronger; as a result of her efforts, Pennsylvania began screening for Krabbe in 2021 (Act 133 of 2020). After successfully seeing Act 133 of 2020 enacted, Lesa guided a group of passionate moms to success with Act 29 of 2022 (related to cCMV screening), which was signed in June 2022. Lesa served as Director of Advocacy for the Leukodystrophy Newborn Screening Action Network (LDNBS.org) before transitioning to Lesa Brackbill Consulting, LLC. She focuses on educating advocates and building coalitions with all interested parties as they work toward a world where every baby is screened equally for all possible leukodystrophies and treatable rare diseases. She is also the Associate Director of Advocacy for Patient Advocacy Strategies. Lesa serves on the Board of Directors for KrabbeConnect and serves on the committee behind KrabbeFacts.org – a project seeking to improve education about Krabbe disease on the Internet. She is an ambassador for the Family Education program of Expecting Health, and the parent advocate on the LSD Subcommittee of the Pennsylvania Newborn Screening Technical Advisory Board. Additionally, she is on the State Policy Committee for Life Sciences PA and a member of the EveryLife Foundation’s Public Policy and NBS Community Congresses. Most recently, Lesa was asked to join the Patient Advocacy Advisory Council for the Institute for Gene Therapies as well as the APHL Condition Counting Workgroup. Lesa is the author of Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph which chronicles her family’s journey with Krabbe Disease and finding hope and joy in the journey. She blogs regularly and is also a co-author of two journal articles. Lesa holds a Bachelor of Arts in Political Science and a Master of Arts in Strategic Communication, both from Azusa Pacific University.