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Stories of NF: Andrew D.

Apr 27, 2017, Posted in NF Hero, NF1

At Andrew's three year checkup, his pediatrician noticed the presence of multiple café au lait spots on Andrew's body. He referred us to a genetic specialist for further investigation. He also printed out some general information about NF. The specialist clinically diagnosed Andrew with NF type 1, and a genetic work-up confirmed the initial diagnosis. The original diagnosis was on October 27, 2016.

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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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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.

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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.”

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