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 is the Director of Advocacy for Patient Advocacy Strategies, and previously established and directed the Leukodystrophy Newborn Screening Action Network. 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 conditions. 

Lesa serves on the Board of Directors for KrabbeConnect and was part of developing KrabbeFacts.org, a project aimed at improving online education about Krabbe Disease.

She is an ambassador for the Family Education program of Expecting Health, and previously served as 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.

In her “free time,” Lesa is a tour guide at High Point – the home of Milton S. Hershey and a weekend manager at The Hershey Story. Most importantly, she is raising identical twin boys, Isaiah and Caleb with her husband, Brennan, in Hershey, PA.

Lesa is originally from Red Bluff, California, and moved to Pennsylvania in 2008 to pursue a career in lobbying. Lesa holds a Bachelor of Arts in Political Science and a Master of Arts in Strategic Communication, both from Azusa Pacific University. 

Victoria

Victoria Ruth Brackbill was born on July 30, 2014, and was seemingly healthy and strong. However, on January 7, 2015, everything changed. Six weeks later, she was diagnosed with Krabbe Disease, a terminal form of leukodystrophy, and Lesa and Brennan experienced the worst day of their lives. Tori passed away on March 27, 2016, at twenty months old.

To learn more about Tori and Krabbe, you can read Even So, Joy, watch her documentary, or listen to this presentation. You can also watch the video made by Forge Biologics about our family’s journey.

Interests

Award Nominations

Finalist for the Rare Voice Awards in 2021 and nominee in 2022 (State Advocacy category)

Finalist for the Community Advocate Award from KrabbeConnect in 2021; recipient in 2022.

Work Experience

Connect with me on LinkedIn to view my resume and work experience.