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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.

NF2 Clinical Trial Overview

Feb 28, 2017, Posted in NF2, Science

By Salvatore La Rosa, PhD, Children’s Tumor Foundation VP, Research and Development

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 MEK 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? What is the status in the clinic for this condition? Well, I would like to focus on four drug trials that are ongoing and that promise to bring great news for our patients in the short term.

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