Stories of NF: Robert P.

Feb 15, 2017, Posted in NF Hero, NF1

Robert was diagnosed with NF1 when he was 10 years old.

“NF doesn’t stop me from what I want to do. It doesn't impact what I do in day to day. While it does affect my future joining the military, I hope to join the police department someday. Right now, I work at K-Bob’s Steakhouse.


NF Hero in the News: Tulsa World profiles Jerry Willman

The start of the month of February means one thing… Cupid’s Undie Run events taking place across the country! As participants continue shedding articles of clothing and raising money to support NF research, Tulsa World spoke with Jerry Willman about finding out he had neurofibromatosis, what it’s like living with NF and why he keeps running the same mile again and again.


Stories of NF: Sloan B.

Jan 24, 2017, Posted in NF Hero, NF1

“We learned of Sloan’s diagnoses in early December of 2015. It was right before his 5th birthday... I believe that we will always have to deal with NF. He will always be a bit behind all of his peers. I'm confident, though, that it will not detour Sloan from accomplishing all that he wants to accomplish in life."


Iron Butt 4 NF

Jan 17, 2017, Posted in Awareness, Community, Fundraiser, NF Hero, NF1

By Greg Davis

Iron Butt 4 NF, an odd name for a fundraising event wouldn't you say? If you've ever ridden a motorcycle for hundreds of miles, you can relate to the title.


Stories of NF: Marisa M.

Jan 10, 2017, Posted in NF Hero, NF1

“I was diagnosed with NF when I was a child. When I was kid, I had some trouble paying attention due to a mild form of dyslexia.  From kindergarten all the way through college I would get extra time on tests, I was never medicated. My mother and my teachers, always understood me, and I always did my best. As of right now it's pretty difficult since I have some tumors growing on part of the nerve in my neck area on the right side. At the moment I can no longer grasp, write, or pick up anything with my right hand. I'm also in pain 24/7. Some nights the pain is so severe that I get no sleep. I'm learning to do things with my left hand."

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