NF Walk Supports People With a Genetic Condition Called Neurofibromatosis

Gov. Burgum proclaimed neurofibromatosis awareness day

FARGO, N.D. — Dozens in the community are taking steps to support those living with a disease called neurofibromatosis.

Organizer Darcy Barry was diagnosed when she was 18.

“Devastation, my life was going to end, will I ever be married, will I ever have a family, how long am I going to live…” Those were the thoughts that were going her mind.

The disease causes tumors to grow on nerve tissue.

“Everyone’s stage is different, some have it pretty bad, others you might not even know they have NF,” Barry said.

Dozens of people showed up for the third annual NF walk and fundraiser.

Money raised will go to those living with the condition and will provide help with medical bills, special equipment and sending people to NF Camp.

Becki Radeck gets to go for the first time in several years.

“It’s like a whole different world with everybody that knows NF, it’s an awesome place,” she said.

Although it’s a rare disease, it’s getting more recognition. Gov. Doug Burgum has even proclaimed June 8 to be Neurofibromatosis Awareness Day.

“It’s good to know people are learning about it,” Radeck said.

That awareness is a reminder everyone deserves to be treated with kindness no matter what they look like.

“At times some people back away because some people get stared at and are afraid, and there should be no fear with NF because just because they have spots on their skin on their arms or legs or toes, they’re still a human being,” Barry said.

Barry is married and has grandchildren now.

Even though getting the news of her diagnosis was devastating, it’s now her passion to make sure others feel supported when they hear the word neurofibromatosis, too.

There is currently no cure for NF, and about 1.5 million people worldwide are affected by it.

Categories: Local News, North Dakota News