Photo Contest 2017 Winner Announced

Jun 23, 2017, Posted in Awareness, Community, NF Hero, NF1

We’re excited to announce the winner of the 2017 NF Awareness Month “Where in the World do you End NF?” photo contest!


Dear Dad, Signed Nick Gilbert

Jun 15, 2017, Posted in Latest News, NF Hero, NF1

In honor of Father's Day, NF Hero Nick Gilbert wrote an open letter to his father:

I was diagnosed with NF when I was just 15 months old, so I don’t remember the exact feeling of finding out that I had this condition. It has always been second nature to me to have a positive attitude about my day to day activities, and I owe this all to my dad.


In My Own Words: Finding Out I Had NF

Jun 14, 2017, Posted in NF Hero, NF1

By Sarah Gabriel

At age 13 I went in for a checkup, a normal yearly checkup. My goal? To get in and out of the doctors as quick as I could so I could hang out with my friends later on that day. Little did my younger self know, that, that one normal check up would change my life, and the the way I thought about myself. It started with my regular doctor being out sick. I had a different doctor and while sitting on the table explaining my odd feelings in my veins she  casually asked “ Do you think it has  anything to do with you having Neurofibromatosis? Are you anxious about it?” That was the first time I had ever heard that word. I stared at my mom.

NYT Opinion Page: I Lost My Voice, but Help Others Find Theirs

Jun 7, 2017, Posted in Awareness, NF Hero, NF2

By Alex Hubbard

NASHVILLE — I can tell you the exact moment I realized my voice was broken.

I was sitting in a cubicle inside Pulitzer Hall, the home of the Columbia University Graduate School of Journalism. I was on the phone with a former top official at U.S.A. Hockey — a man whose name I knew well from having grown up a hockey fan. He was supposed to give me an interview for my master’s project, a large journalism assignment that most other graduate students would compare to a thesis. I was excited for the help and also excited to speak to someone so well known to me. Then he said it.

“I’m sorry. I want to help you, but I can’t understand you.”


Stories of NF: Tyler W.

Jun 6, 2017, Posted in NF Hero, NF1

“When my son was about 13 years old, he had blurred vision, slurred speech, and a hallucinating episode which I thought may have been a reaction to an allergy medicine. I took him to a local ER and it was there that we found that my son has multiple brain tumors, several brain stem gliomas and hydrocephalus."

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