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.
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.”
Frankie and Olyviah are siblings living in Eugene, Oregon. Both Frankie and Olyviah were diagnosed with NF as babies; their mom, Ayanna, also has NF1. As the 2018 NF Ambassadors, Frankie and Olyviah will attend the NY Gala on November 9, 2017 in New York City. They will also continue their involvement with the Foundation throughout the year at the annual Seattle NF Walk, NF Camp and other events that take place around the country.
Earlier this month, more than 70 researchers, clinicians, patients, staff, and other experts gathered in Palm Beach, Florida for the first Synodos Network Meeting, hosted by the Children’s Tumor Foundation.