First Synodos Network Meeting Hosted by CTF

Earlier this month, more than 70 researchers, clinicians, patients, staff, and other experts gathered in Palm Beach, Florida for the first Synodos Network Meeting, hosted by the Children’s Tumor Foundation.

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Stories of NF: Amelia N.

Aug 16, 2017, Posted in NF Hero, NF2

Amelia was diagnosed with NF2 at the age of 4. We are constantly at doctors and very scared of anything new that comes up. Her brain tumor was malignant and a grade 3, which was very scary and turned our lives upside down. We have become stronger by keeping things positive, crossing bridges only when they appear, and keeping everything "yellow" (Amelia's favorite color).

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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Soundtrack of Silence: Matt Hay’s NPR interview

Apr 18, 2017, Posted in Awareness, CTF in the News, NF Hero, NF2

Matt Hay spoke with KQED-FM's (Northern California Public Broadcasting) new storytelling podcast, Q'ed Up, about losing his hearing, falling in love with his wife, starting a family, and living with neurofibromatosis type 2. Matt is a member of the Children's Tumor Foundation Board of Directors. 

Soundtrack of Silence: Matt Hay’s NPR interview transcript pt.2

Apr 18, 2017, Posted in Awareness, CTF in the News, NF Hero, NF2

Matt Hay spoke with KQED-FM's (Northern California Public Broadcasting) new storytelling podcast, Q'ed Up, about losing his hearing, falling in love with his wife, starting a family, and living with neurofibromatosis type 2. Matt is a member of the Children's Tumor Foundation Board of Directors. This part of the transcript picks up in the middle of the interview.

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