Stories_of_NF_-_Kelly_R.

Gaining Knowledge About Neurofibromatosis Empowered Me

Jul 25, 2017, Posted in Awareness, NF Hero, NF1

By Kelly Rulle

Recently, I was asked the following, “What's one "survival tip" you'd like to share with other people living with neurofibromatosis (NF)?” So many things ran through my mind: dealing with bullies, hurtful comments, or painful days, how could I pick just one? But if I had to say just one thing, it would be, “Learn!”

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!

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Desmond Family Presents Check to Help Fight NF

Jun 19, 2017, Posted in Awareness, Community, Fundraiser, Latest News

On June 15th, nearly 200 members of the Children's Tumor Foundation community from all over Colorado watched the Colorado Rockies play the San Francisco Giants at Coors Field in Denver. The event was the third annual NF Night at the Rockies, which aims to raise funds for CTF and gather local NF families together to enjoy a great evening of baseball.

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.”

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