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We are pleased to present a summary of the 2018 Joint Global Neurofibromatosis Conference, held in Paris at the Maison de la Chimie on November 2 – 6, 2018.
The support and planning of this particular conference was historic in that the Children’s Tumor Foundation (CTF), for the first time, combined forces with the European Neurofibromatosis Group, Association Neurofibromatoses et Recklinghausen, and the NF2/Schwannomatosis State of the Art group, to form the most comprehensive agenda and largest gathering of NF researchers, clinicians, patients, and patient advocates, with over 800 people from around the world in attendance.
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.
Children’s Tumor Foundation Announces New Initiative for World NF Awareness Day
NEW YORK – February 6, 2019 – Over 2.5 million people worldwide are affected by the genetic disorder neurofibromatosis, also known as NF, a condition that surprisingly few have heard of. The Children’s Tumor Foundation is working to change that by leading a movement to “Wear Blue & Green on May Seventeen.”
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.