Orlando woman participates in clinical trial for rare tumor disease, paves way for treatment options

FDA approves pediatric treatment for neurofibromatosis

ORLANDO, Fla. – A young woman from Central Florida with a tumor disease has been volunteering in a national clinical trial to help others born with the same rare condition.

in February, father and race director Bill Brooks organized a charity run for hundreds of volunteers around Lake Eola.

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The Cupid's Undie Run has raised half a million dollars toward research for neurofibromatosis, a condition Brooks' daughter Lilly Ann was born with 20 years ago.

"The man said, 'I'm sorry to have to tell you but there is no cure,'" Brooks said.

Now, thanks to a clinical trial Brooks’ daughter participated in, the first therapy for pediatric patients 2 years of age or older, has been approved by the FDA.

"I'm like wow, that's a big thing, you know a parent's never going to have to hear that there's nothing they can do for their child again," Lilly Ann Brooks said.

The drug, Selumetinib, was approved April 10. Lilly Ann is now a college student who has plans to return to Central Florida after graduation and pursue a career at Disney World.

“Being able to make career goals like that is something that I never knew I could be able to do because we weren’t sure if I’d be able to go off and be on my own away from my parents, but because of this clinical trial and because of drugs like this has made it possible,” Lilly Ann said.

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