Everyone who registers for the Virtual Steps2Cure NF Walk and Run will receive an NF gaiter. With a virtual walk, you are able to train and participate at your own pace while practicing social distancing and then, during July 18 – July 25, walk, run, ride, or swim 3 miles for Neurofibromatosis Northeast! Click below for […]
Camp New Friends
NF Camp is a fun and supportive environment for kids with neurofibromatosis. Camp New Friends will be virtual this year! For Ages: 7-17 Duration: 5 daysDates: July 20 – 24, 2020Tuition: $200Need-based scholarships are available and payment plans can be arranged. Medical Leader: Dr. Kaleb Yohay, child neurologist and expert in NF at New York […]
Educating your NF Child at Home
Parents are you educating your NF child at home during Covid-19 quarantine? Education Specialist Meredith Chambers from Boston Children’s Hospital shares a few tips that you may find helpful. Watch this informative interview with Lori Ryan, Chair of the NF Northeast Board of Directors.
Educating your child during COVID-19 Quarantine
NF Northeast Board Chair, Lori Ryan sat down (via Zoom) with the Educational Specialist at Boston Children’s Hospital, Meredith Chambers, MEd to discuss tips on educating your NF Child during this COVID-19 Quarantine. Check it out!
First FDA Approved Therapy for NF
The U.S. Food and Drug Administration has approved Koselugo (selumetinib) for the treatment of pediatric patients, 2 years and older, with plexiform neurofibromas – a type of tumor that occurs in patients with neurofibromatosis type 1 (NF1). Koselugo is a MEK inhibitor which was co-developed by AstraZeneca and Merck & CO. Neurofibromatosis (NF) is a […]
