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Team will row hundreds of miles to help find cure for neurofibromatosis

A Nassau County woman will row from Miami to Fernandina Beach to raise money for people battling neurofibromatosis.

FERNANDINA BEACH, Fla. — It's a disease that will kill her. However, a local woman hopes that by battling the disease, she can help lead to a cure for thousands of people.

NF, or neurofibromatosis, is a disease that develops tumors in a person's brain, spinal cord and other parts of the body; it's also something that Michele Holbrook has lived with for more than 20 years.

This year she's going to join a team that will row more than 350 miles through the Atlantic Ocean from Miami to Fernandina Beach to raise awareness and money for a cure for NF.

Earlier this spring, a group gathered near a marina to look at the boat Courageous, which is the vessel that Holbrook and three other people will row from Miami back to Fernandina Beach this fall to raise money for neurofibromatosis research.

One of the people involved is Erica Givens. And while she seems like an average 34-year-old woman, her life changed forever during a doctor's appointment in 7th grade.

"At that point she had tumors on both of her ear nerves and one of her optic nerves in her brain," said Erica's mother Cheryl Givens. "And pre-tumorous lesions in her sinus cavity."

Over 20 years of battling NF2, Erica Givens had three brain surgeries, two bouts of radiation, the complete loss of her hearing and now only has the use of one eye.

"At 21 she had to learn to communicate with the world again," said Cheryl Givens. "Learn how to walk again because her balance was completely gone."

But with money donated for research, advancements have been made to help Givens live closer to a normal life. Recently she was fitted with AR glasses that feature new technology to pick up conversations around her by printing words inside the lens of her glasses.

"Unlike other transcribed apps that just run everything together, these actually have the ability to tell the difference between tone of voices and show speaker one, speaker two and speaker three in different colors on the screen, so she can keep up with communication and conversation while looking at someone," said Givens.

Money raised by Holbrook will help people with NF cope with life just like Erica Givens has learned to do since her diagnosis in 7th grade.

"Since that time she's earned her college degree and is working on a bachelor's in writing and is writing short stories and has mastered sign language and runs about a mile and a half every day," said Cheryl Givens.

The month of May is Neurofibromatosis Awareness month and this story is the first in a series that First Coast News will air about Holbrook's fight to battle this disease. 

For more information about her cause as well as the team planning to row on Courageous, visit this website.

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