Missouri Walk of Neurofibromatosis brings awareness to Columbia

An awareness walk took place in Columbia Saturday that brings attention to a genetic disorder.

The eighth annual Missouri Walk of Neurofibromatosis took place on May 30 at Stephens Lake Park.

The event helps raise money and awareness for people who have the genetic disorder neurofibromatosis (NF).

There are three types of NF: neurofibromatosis type one (NF1), neurofibromatosis type two-related schwannomatosis (NF2-SWN), and schwannomatosis.

While the three types of NF are genetically distinct, they share the common feature of causing tumors.

The severity of symptoms and the specific manifestations of the disorders can vary significantly from person to person.

NF1 is the most common of the conditions, affecting approximately one in 2,500.

NF2 affects around one in 25,000 and other schwannomatosis types affect around one in 40,000.

Together, the disorders affect at least 1 in 2,000 people or approximately four million worldwide.

Anyone can be born with an NF disorder, and they have a 50% chance of passing it on.

For Christina Thomas, an organizer for Missouri Walk of Neurofibromatosis, the walk means “the world” to her.

“I’ve always been about advocating for NF and bringing people together,” Thomas said. “It’s awesome to see so many people coming together who have it.”

Thomas is the third generation in her family to have NF, and three of her four kids also have the condition.

“I grew up thinking my family was the only one with it. To me, it’s very important to be able to let people know that they’re not the only ones with it.”

Thomas said she was often teased when she was younger because her father, who also has NF, had tumors all over his body.

“I was always made fun of because of his appearance. People tell me, ‘You don’t want to get close to her she’s contagious.’”

Thomas said she joined the walk because she wants to bring people together who have NF and let them know they are not alone.

Another of her goals is to get the attention from the University of Missouri.

“Our ultimate goal is to get the attention of the University of Missouri, because not for me, not for my kids, but maybe for my grandkids or the ones that are nearly diagnosed, for us to have an NF clinic here instead of having to travel to Kansas City or St. Louis for expert care.”

She said the best way for the community to support those living with NF is through education and awareness.

“We’re always about advocating. We’re always about bringing awareness.”