Keith Hall and His Family

Photos and text used with permission of
Keith Hall.

When Keith Hall was 12 years old, his doctor delivered life-changing news: his facial angiofibromas were caused by tuberous sclerosis complex (TSC).

Although Keith considers himself fortunate to experience only some of the manifestations of TSC, the disorder has profoundly influenced many important aspects of his life including his family life and where he works and lives. Primarily because of TSC, he and his wife have chosen to build their family through adoption, and today they are the proud parents of two beautiful children. For the same reason, he has chosen to live in the Northeast where his physicians are easily accessible. Keith values his employment as a state government civil engineer, which provides critical health benefits and job security. TSC also affects how Keith chooses to spend his time: today, over 30 years after his diagnosis, he is a leading advocate for the TSC community.

Keith began volunteering with the now Tuberous Sclerosis (TS) Alliance in 1996, helping to run local events in Connecticut. He later joined their Adult Task Force, helping to find ways to better serve adults living with TSC. Keith joined the TS Alliance Board of Directors in 2011, and each year since then he has participated in the TS Alliance's annual "March on Capitol Hill," meeting with as many members of the US Congress as possible to advocate for continued funding for the Tuberous Sclerosis Complex Research Program (TSCRP).

It was during the first of these "Marches" in 2010 that Keith really came to understand the critical role that TSCRP plays in providing the precious research dollars that scientists rely on to unlock the genetics and find cures for this disorder. He was honored to be offered the chance to serve on the TSCRP Peer Review Panel, where, as an adult living with TSC, he brings a unique and personal perspective.

As a Consumer Reviewer, Keith says, "It was easy to feel like this group of experts had gathered to help you or those you care about solve the riddles behind the medical mysteries impacting your life. Listening to these motivated scientists provide thoughtful critiques really gave me hope that more meaningful discoveries are close, not only for TSC but for other disorders this research will help unlock."

Keith enjoys playing sports, giving back to his local community by volunteering at the Inland Wetlands Agency, and vacationing with his family in Maine and Florida. His single greatest piece of advice for those whose lives have been touched by TSC is to get involved. "Whether it is participating in a Community Alliance walk, joining a support call, participating in a clinical trial, making a friend on social media sites or calling upon your politicians to support research funding, you will learn that there are in fact others like you out there and that you are not alone," says Keith. "Everyone can help make a difference. It doesn't matter how big or small, only that you never stop trying."

Last updated Thursday, May 26, 2022