Tuberous Sclerosis Complex (TSC) is a devastating genetic condition resulting in the growth of benign tumors throughout the body. Vital organs including the brain, heart, kidneys, lungs, eyes, and skin may be affected, resulting in symptoms potentially including seizures, lung and kidney disease, intellectual disability and developmental delay. While this condition is considered rare, it may affect as many as one individual in 12,500.
The Tuberous Sclerosis Alliance, or TSA, provides support and advocacy efforts for many in the TSC community. TSA has drawn support from a number of recognized names and faces, including actress Teri Hatcher and chef/TV host Rachel Ray.
One famous supporter of TSA initially became involved with the TSC cause following a chance encounter in 2003. After meeting a father whose son suffers from TSC, actress Julianne Moore, 2015 Best Actress Oscar winner, was inspired to become a champion for the cause. Though Moore and her family are unaffected by the disorder, hearing the family’s story was profoundly rousing.
In recent years, Julianne Moore has used her acting chops to lend her support to the TSC cause, producing a number of public service announcements, providing congressional testimony, and attending many fundraising events to raise awareness for this rare disease community.
Moore herself writes, “Sometimes people ask me, “Why support the Tuberous Sclerosis Alliance?” First, TSC can happen to anyone. Second, TSC is a “lynchpin disease,” which means TSC research creates breakthroughs in how we treat cancer, epilepsy and even autism. But more important, I’m committed because of the families who work so tirelessly on behalf of their children. I have never met a more committed group of people who, by their own sheer will and tenacity, have forced the medical community to investigate this disease.”
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