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.

Recruiting for a research study aimed at helping adults with NF2

Mar 16, 2017, Posted in NF2, Outside Opportunities, Science

The Family Center for Neurofibromatosis at Massachusetts General Hospital is conducting a research study aimed at helping adults with NF2 who are deaf or have severe hearing loss manage stress associated with NF2

NF2 Clinical Trials: Stories of Progress

Feb 28, 2017, Posted in NF Hero, NF2, Science

Every year, on the last day of February, we recognize Rare Diease Day, a time for the entire rare disease community to come together to raise awareness. NF affects 1 in 3,000 people overall; NF2 is even more rare (1 in 25,000) and schwannomatosis even more rare (1 in 40,000). These days, there is a lot of excitement and hope for the MEK clinical trial for inoperable NF1 plexiform tumors (click here to read about the trial). Over 70% of patients had a dramatic response and saw their tumors shrink 20% or more. This is unprecedented and really makes us hope that this drug will soon be approved by the FDA as the first-ever treatment for NF1. But what about NF2? Even though it's the MEK trial making headlines in NF these days, there is a lot going on also for NF2. In recognition of Rare Disease Day, we're sharing these stories about two adults living with NF2 and their experiences in the Avastin (Bevacizumab) trial.

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