Carole Pitard

Photo Credits: Carole Pitard

Carole Pitard describes her life as "two tiers: Before tuberous sclerosis and After tuberous sclerosis." When her children were diagnosed with tuberous sclerosis complex (TSC) in 2006, Carole had no idea what it was, had no one to talk to about it, and felt helpless and alone. Reading a description of TSC on the internet only made her feel worse. Eventually, she heard about the Tuberous Sclerosis Alliance and reached out to them to talk about the nocturnal seizures her son was having. She was relieved to finally talk to someone who knew about TSC and who gave Carole her full undivided attention for an hour and a half. This amazing person on the other end of the phone then delivered some completely unexpected news that thrilled Carole and filled her with hope - a new TS clinic was opening the following year at nearby University of Alabama at Birmingham (UAB) with a team of doctors dedicated to TSC. This uncanny coincidence changed her outlook on the diagnosis; she decided that, instead of stewing, she would redirect her energy into something positive. She never looked back.

Since then, Carole has been very involved in many TSC advocacy organizations and is dedicated to raising awareness and funding for TSC. In addition to being the Chair of the Greater Alabama TS Community Alliance since 2007 and the Chair of the Alabama Step Forward to Cure TS Walk from 2008-2015, Carole is the UAB TS Clinic Ambassador. As the Ambassador, she meets with families affected by TS and assures them they are not alone and that there is hope.

Carole first learned of the Tuberous Sclerosis Complex Research Program (TSCRP) through her involvement with the TS Alliance and describes it as one of her most rewarding experiences. Since 2008, she and other TS Alliance representatives have travelled annually to Washington, DC to lobby for continued funding for TSCRP. Her confidence has increased over the years and she has learned to never give up because "persistence can pay off." She has recently become a member of the TS Alliance Government Relations Committee, which focuses year-round on TSCRP and is looking forward to contributing even further with that committee.

Outside of her work as a TSC advocate volunteer and working with the UAB TS Clinic, TSCRP and TS Alliance, Carole enjoys spending time with her family, going to church, going to the lake, and volunteering in her community.

Her experience serving as a consumer reviewer for TSCRP has been very positive. Carole notes that each panel member plays a part and brings different strengths to the table. She appreciates the role of the researchers and scientists on the panel, who dissect the science of the proposal, thereby allowing the consumer panelists to focus on the proposed research's potential impact on the TSC community. Carole is very impressed and pleased with the scientific community's commitment to understanding the pathogenesis and manifestations associated with TSC in order to improve the lives of those affected by the disease. What excites and motivates Carole even more is the idea that TSC research can potentially benefit other diseases such as cancer, epilepsy, autism, to name a few. Her belief has become her rallying cry: There is hope because of research!

Last updated Thursday, May 26, 2022