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Actress Julianne Moore hosted Tuberous Sclerosis Alliance's 35th anniversary gala earlier this month, with big names such as Rachael Ray, Amy Grant and Vince Gill also in attendance.

TS Alliance is the leading organisation funding research into the cure for tuberous sclerosis complex (TSC), a genetic disorder that causes tumours to form on organs, which can be life threatening. TSC is also the leading genetic cause of infantile spasms, epilepsy and autism. Surprisingly unheard of in the general population, over one million people are known to have TSC and many more as yet undiagnosed.

Moore, who is now the honorary chair of the charity, was introduced to it through a stranger. She recalls: “A dad and his little boy approached me on the streets of New York. The child’s head was stitched and bandaged. The man explained his son had tuberous sclerosis, a genetic disorder that can cause brain tumours, epilepsy, autism, kidney failure and even death, but not enough is being done to find a cure.”

The $225,000 in proceeds from the fundraising gala will help, but the obscure condition is not getting enough public attention and therefore not enough government funding.

“[The dad] asked for my help,” says Moore. “How could I say ‘No’? How can you?”

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