Save the date: 2018 NF Conference in Paris, France

Apr 20, 2017, Posted in Collaborations, NF Conference, Science

Mark your calendar: the 2018 NF Conference will be taking place November 2-6, 2018 at the Maison de la Chimie in Paris, France.  As details become available, they will be posted at www.ctf.org/nfconference

NTAP Call for RFAs: Cutaneous Neurofibromas

Apr 20, 2017, Posted in Collaborations, NF1, Outside Opportunities, Science

Neurofibromatosis Therapeutic Acceleration Program (NTAP) is launching a new research program focused on understanding the pathogenesis of cutaneous neurofibromas. NTAP is a philanthropic research entity based at Johns Hopkins University dedicated to the discovery of therapeutics for the peripheral nerve tumors that afflict people with neurofibromatosis type 1 (NF1). Cutaneous neurofibromas represent a major unmet need for NF1 patients. This research program sets the blueprint for improving therapeutics for these tumors by encouraging research proposals that improve the Understanding of Cutaneous Neurofibromas

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.

Stories of NF: Jenna G.

Apr 11, 2017, Posted in NF Hero, NF1

As I grew up, I had to realize that I wasn't different. I may have NF1 but it doesn't mean I can't go for my dreams. I have only had one neurofibroma in my 18 years of life. I am very fortunate to be in this position. Getting older, I have realized that I could get more neurofibromas in the future but I am not going to let that stand in the way.