Children’s Tumor Foundation Hosts “Shine a Light on NF” Gala to Support Rare Disease Research

Nov 6, 2017, Posted in Fundraiser, Galas, Latest News, Press Release

Honorees include Freda Lewis-Hall of Pfizer, Lara S. Sullivan of SpringWorks Therapeutics, NF Ambassadors Frankie and Olyviah Moriguchi, and a special tribute to the NF Patient

With Master of Ceremonies Raina Seitel, NBC Host & Correspondent

NEW YORK – On Thursday, November 9, 2017, prominent New York business leaders, together with friends, families and fundraisers, will gather at The Lighthouse on Pier 61 for the annual Children’s Tumor Foundation New York Gala, which this year will “Shine a Light on NF.” Funds raised will support research into neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body and affects 1 in 3,000 births of all populations. There is currently no cure.

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Stories of NF: Michael S.

Nov 7, 2017, Posted in NF Hero, NF1

I was 4 years old when I was diagnosed with NF1, but there were signs early in life that there was something wrong. When I use to run, my legs would run out to the sides, due to a low center of gravity. It also affected my motor skills. I had to be stitched up three times before I was 18 months old, as I kept falling down our back stairs, and the nurses use to think that my parents were harming me, for me to be hurt that many times in a short time period.

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I Live with Neurofibromatosis, But That’s Not What Gives Me Life

Nov 6, 2017, Posted in NF Hero, NF1

By Megan Ross
I stepped off the light rail into the damp afternoon. A man who had been in the same train from downtown Portland remarked about the drizzle that lightly fell. I smiled.
“I like your smile,” he said, “I hope you don’t mind, when I first saw you, I wanted to feel sorry for you.” He motioned to his face, referring to the disfiguring tumors on mine. “But I see life in you. It’s in your eyes.”

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Innovative Medicines Initiative Brings Together Research Leaders at Global Gathering

Nov 2, 2017, Posted in Collaborations, Latest News, Science

Neurofibromatosis (NF) knows no boundaries, and while the Children’s Tumor Foundation (CTF) is based in the United States, its work is global, funding and collaborating with the best researchers on the planet working on NF.  In that spirit, we highly applaud the efforts of the Innovative Medicines Initiative (IMI). The IMI, based in Brussels - Belgium, is a public private partnership between the European Union and the European Federation of Pharmaceutical Industries and Associations that facilitates research collaboration in order to advance the development of medical treatments.

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