Tina Kell was an aspiring dentist who struggled with debilitating pain. Her journey with schwannomatosis started during her endodontic residency at the age of 35 when she sought medical attention for a large growth under her mandible. After seeking a diagnosis from many physicians and undergoing unsuccessful painful needle aspirations and a multitude of tests, […]
Connecticut is Driving out NF
October 7th is the date for the first annual Driving Out NF Golf Tournament to be held at the Glastonbury Hills Golf Club in South Glastonbury, CT. The committee is hard at work to make this a great day for golfers and for NF! Get more information here.
Justin Evans – inspirational while facing adversity
Dwight and Susan Evans have shared a beautiful tribute to their son Justin who passed away on Easter Sunday. Justin was a familiar face at our NF Northeast events, always smiling and helping in any way that he could. He never talked about the many challenges he had to face because of neurofibromatosis, instead he […]
Health Supervision for Children with Neurofibromatosis Type 1
April 22, 2019 – David T. Miller, MD, PhD, FAAP, Debra Freedenberg, MD, PhD, FAAP, Elizabeth Schorry, MD, Nicole J. Ullrich, MD, PhD,David Viskochil, MD, PhD, Bruce R. Korf, MD, PhD, FAAP Neurofibromatosis type 1 (NF1) is 1 of the most common inherited genetic conditions, affecting approximately 1 in 3000 individuals.1 NF1 is a multisystem […]
Leah Manth – Facing NF2 with Courage and Grit
Watch this inspiring video about a young woman’s endless battle against NF2 and the family and community who are in this fight with her.
