“I have over 100 tumors in my body,” Amelia Island woman advocating for those with rare disease

FERNANDINA BEACH, Fla — An Nassau County woman is fighting for kids with a rare type of cancer, one that she is still struggling with today.

“I look very normal on the outside,” said Michele Holbrook. “Believe me. I’m not. I have over 100 tumors in my body.”

In her 20′s, she was diagnosed with a type of genetic nerve disorder called Schwannomatosis.


“I’m in excruciating pain daily,” said Holbrook. “Nothing that I do, or don’t do stops that pain.”

There’s no cure for NF, but the reason Holbrook became so passionate about it was because of her family.

“I had a chance of passing it to my son,” Holbrook said. “My son has a 50/50 chance of it being passed to our granddaughter.”

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Holbrook was recently named the 2023 Children’s Tumor Foundation ambassador and plans to use her new role to advocate for research funding.

“I want to advocate to Congress and government officials for them to give us funds for research,” said Holbrook. “Because the more research we have, the more likely we’re going to be able to find a cure.”

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Holbrook said the best way to help those with this rare disease is to donate.

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