When Brittany Smith learned that her infant daughter Helen had tuberous sclerosis complex (TSC), she felt shattered. “It was devastating. It was so sad, because we knew it meant that she would have an atypical childhood and probably wouldn’t grow up with typical abilities.” Luckily, the hospital referred them to the TSC Alliance, which changed everything. She was able to step away from fear and embrace hope. “Going to our first TSC Alliance World Conference was a great opportunity to meet other people who had TSC, or whose children had it, and learn about all the innovation and progress that had been made by the community.”
Attending three straight world conferences (in 2014, 2018, and 2022) Brittany learned a great deal about the progress in research and clinical care over the years. “It’s fantastic to have so many smart doctors and researchers who are focused on TSC. I credit a lot of that to the TSC Alliance. They do so much to support the community.”
Brittany says the TSC Alliance and the TSC clinic at Cincinnati Children’s Hospital have been pillars of support for her family over the last 12 years. “We’ve personally benefited a lot from the research and the education.”
Helen is now eleven and a half, with the cognitive capabilities of a one-year-old, her mother says. She is currently part of a behavioral study through the Cincinnati clinic. Although Helen is severely impacted by TSC, her two sisters, aged fourteen and eight, have stepped up to help. “They are amazing. It’s quite a balance to be raising three little girls, one of whom has these medical and physical challenges.”
Brittany prefers not to focus on the setbacks, but on what she can do to improve the lives of Helen and others like her. That’s why she serves on the Board of Directors and contributes generously to the TSC Alliance. “I give because I want to make a difference for Helen and for people like Helen – and I think the TSC Alliance is a great steward to help our community.”
“The organization is very lean. About 80 cents of every dollar is going towards programming and research, which is best in class. It’s exciting to see how you can have a real impact on people’s lives and quality of life. Not only the person with TSC but their family members. Because it really does impact everybody who touches this person with TSC.”
Her hope is that today’s pioneering TSC research will eventually help reduce the damage done by brain tubers. “Helen doesn’t need to be like a typical 11-and-a-half-year-old, but I would love for her to be a little older than one. That’s a really young age to be stuck at. Anything that we can do to help the population from a brain development perspective would be amazing.”
Help the TSC Alliance accelerate TSC research by donating to the 50 Forward Fund!