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Westin was 3 years old when he was diagnosed with NF1. Westin has a speech delay, café au lait spots, and scoliosis. When Westin was 4 we had the genetic testing done to confirm diagnosis; he has NF by spontaneous mutation.
One of the more exciting developments in neurofibromatosis (NF) research today is the success of the MEK inhibitor clinical trial, in which over 70% of participants are seeing reductions of 20-55% in the size of their inoperable plexiform neurofibromas. The research surrounding this particular drug, selumetinib, is being prepared for submission to the FDA, and indicators are that it could become the first-ever approved drug for NF.
I was about 4 or 5 months old when I was diagnosed with NF1. In 1st grade I found out I had a tumor in my jaw and I had it removed. I have had about three surgeries on my bottom left jaw and never had teeth grown back since my tumor.
The Neurofibromatosis Therapeutic Acceleration Program (NTAP) is now accepting applications for the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research. The Collins Scholars program brings together a community of exceptionally well-trained clinician scientists who will be leaders in the field of NF1 research.
When Dylan was eighteen months old, we found out he had NF. He was failing to thrive and developed strabismus at age 4. Even after three surgeries in each eye, he lost the ability to see out of his right eye while the left one is open. He also lost all the useful hearing on the right by age eight and is now completely deaf on that side. These are nerve-related losses that have no treatment.... yet!.