Locals lace up to fight neurofibromatosis

To raise awareness for the one-in-3,000 people who are living with neurofibromatosis, the Children’s Tumor Foundation is hosting the fourth annual Orlando NF Walk on Saturday, May 20 at Bill Frederick Park.

“This walk is so important,” said Farida Timal, organizer of this year’s walk. “The patients feel connected to each other and it makes them feel like they’re not alone. They can celebrate with each other and reach out to each other for conversations.”

Neurofibromatosis, also referred to as NF, is a genetic disorder that typically causes tumors to grow throughout the body, leading to a variety of health problems.

For Timal, the walk is personal. Both her husband and son have been diagnosed with the disorder.

“It became a reality for us about five years ago when my son’s MRI came back with tumors by his arteries,” Timal said. “As a mother, it was very hard for me to deal with, so finding a cure means the world to me.”

Because there is no way to cure or treat NF, the Children’s Tumor Foundation is working on research to find more answers. To raise money for research funding, the organization hosts walks across the U.S., including the one in Orlando.

For the Orlando NF Walk, the goal is to raise at least $10,000 for the organization. So far, the event has raised just under $4,000.

There is no fee to participate, but organizers ask that anyone participating help with the fundraising efforts to raise money to meet that $10,000 goal.

Check-in for the walk starts at 9 a.m., and the day will include the walk, food provided by Sonny’s BBQ, music, activities for kids and raffles. There will also be a visit from costumed superheroes to cheer on the walk participants.

Timal said that there isn’t one single person who will be featured during the walk, but she tries to make sure the children who are dealing with the disorder feel included.

“We try to focus on the children, so we do activities that involve them to make them feel important,” she said.

What is NF?

There are three different types of NF: NF1, NF2 and Schwannomatosis. Most people who develop NF1 or NF2 inherit it from a parent while Schwannomatosis happens by chance.

NF1 is known for light brown skin spots, small benign growths on or under the skin and freckling in the armpits. Some people with NF1 also have learning disabilities, softening of the bones, scoliosis and tumors in the brain, on cranial nerves or on the spinal cord. The tumors are usually not cancerous.

NF2 is rarer and is known for benign tumors on the nerves that carry sound and balance information from the inner ear to the brain, which can result in hearing loss. It can also cause cataracts and other eye problems that could lead to vision loss.

Schwannomatosis is the rarest form of NF and causes the development of benign tumors on the spinal and peripheral nerves.

Contact Brittany Gaines at [email protected].