Biography & Experience

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 Outreach Coordinator for Policy and Advocacy for the Leukodystrophy Newborn Screening Action Network (LDNBS.org) and is working toward building a coalition with all interested parties as they work toward a world where every baby is screened equally for all possible leukodystrophies. 

Lesa serves on the Board of Directors for KrabbeConnect and is the co-chair of the Krabbe Stakeholders Group – a collaboration between advocacy, industry, and clinicians seeking to improve many aspects of life with Krabbe.

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

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 on 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 is currently working toward 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.

Interests

Singing – National Anthem
(and other music)

Landscape Photography

Advocacy for Newborn Screening

Writing

Teaching about Chocolate
and Mr. Milton S. Hershey

Amateur Gardening

Book Reviewing

Traveling (nine countries, three continents, 39 states)

Serving Others and Meeting Needs

The Office and Parks & Recreation

Award Nominations

Finalist for the Rare Voice Awards in 2021 (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 resume and work experience.