My son was diagnosed with NF1 in November 2016. He first showed symptoms of cafe au lait spots when he was 6 months old. When he went in for his checkup, they notice a plexiform neurofibroma on his face. We went through three MRIs for his head, brain, and eyes and it confirmed the plexiform on his face, as well as two small tumors in his eyes. He has an oversized head, is very small and short, and has been behind on some of his developmental milestones.
In March, members of the CTF staff were treated to a talk by Synodos for NF1 Principal Investigator Jill Weimer, PhD, of the Sanford School of Medicine. Dr. Weimer discussed the swine model program currently underway, which we hope will lead to a more accurate screening of drugs to treat NF1. Click thru for a transcript of her talk.
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.
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.
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.”