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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.

Volunteer Leadership Council Awards Luncheon

Apr 5, 2017, Posted in Awareness, Community

During the 2017 Volunteer Leadership Council meeting in Seattle, WA, outstanding volunteers were acknowledged for their continued service to the Children’s Tumor Foundation. This year's theme, "Our Shining Examples," is representative of the great value we place on our volunteer leaders at CTF. The highlight of the ceremony was the presentation of the Volunteer of the Year Award. Annette Bakker, PhD, President and Chief Scientific Officer of the Children’s Tumor Foundation, recognized Christy Wheaton of Leoanrd, Michigan as CTF’s Volunteer of the Year.

Advocacy Update

Mar 30, 2017, Posted in Advocacy, Latest News

Children's Tumor Foundation Fights for NF Research Funding in Our Nation's Capital

On Monday, February 27, Children’s Tumor Foundation President and Chief Scientific Officer Annette Bakker, PhD, and Vice President of Marketing and Communications Simon Vukelj advocated on Capitol Hill for continued funding of the Congressionally Directed Medical Research Programs (CDMRP) for neurofibromatosis research.  They met with the staff of nine key Members of Congress who sit on the House Committee on Appropriations Subcommittee on Defense.

Stories of NF: Malorie D.

Mar 22, 2017, Posted in NF Hero, NF1

“My name is Malorie Lynn and I'm four years old. I'm a pre-KINDER student at a school in Texas. I love riding bikes coloring playing with my dolls and spending time with my mom, dad, sister, and brothers, and what makes me happy is my mom and dad because they take such good care of me.”