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Stories of NF: Michael B.

Dec 10, 2018, Posted in NF1, NF Hero

My family and I have been fighting NF together since I was a baby. I have had multiple surgeries over the years to try that make me feel as comfortable as possible. My mom also has NF. Although I am grateful for the life she and my father gave me, I don’t want kids. With the current state of the world, I don’t want to bring in a child to this world with NF. In my eyes, I think it would be a lot more difficult to be a child in this era then it was in my childhood.

Stories of NF: Layla C.

Dec 3, 2018, Posted in Community, NF1, NF Hero

We learned of Layla's NF1 diagnosis when she was only 1 week old.

Layla suffers from severe headaches; there are three growths in her brain stem and one on her spine. She also has restless leg syndrome and ADHD. She has had four eye surgeries since birth.

Johns Hopkins Researcher Seeking Participants for Study on Bullying and Cyberbullying

Nov 26, 2018, Posted in Outside Opportunities, NF1, Science

Genetic counselers at the Johns Hopkins Comprehensive Neurofibromatosis Center are conducting a survey to better understand how bullying and cyberbullying are impacting their adolescent NF patients. This research will be used to better inform their own practice, as well as to develop resources that will be available to teens, families and health care providers of those with NF1.

$1.6 Million Dollars Raised for NF Research at the Ruby Anniversary Gala in NYC

Nov 18, 2018, Posted in Galas, Fundraiser, Community, NF Hero, NF2, Latest News

On a crisp Fall evening at the renowned American Museum of Natural History in New York City, philanthropists, donors and fundraisers gathered with researchers, NF patients and their families to commemorate the Children’s Tumor Foundation 40-year history of fighting NF, and to pay homage to those who first joined together to raise money and awareness when there was none. More than $1.6 million dollars was raised to support exciting NF research endeavors.

Stories of NF: Terri B.

Nov 13, 2018

I was diagnosed with NF2 in 1997. I have had 5 surgeries and 2 Gamma Knife procedures, the most recent being in March 25, 2018.

I refuse to be labeled by my condition. I am simply a person who has to go through some unpleasant times.