Michelle Hirsch Donovan : Taking Control of Neurofibromatosis Through Consumer Action This article was featured on the Congressionally Directed Medical Research Program (CDMRP) website. Michelle has tackled NF from every possible angle: a fundraiser, advocate, spokesperson and most important, as Riley’s mother. We thank Michelle, and honor her for all she has done for Riley […]
Clinical Care Guidelines for Adults with NF1
A group of experts has concluded years of work to develop clinical care guidelines for adults with NF1. The results have been published by Genetics in Medicine, and are officially sponsored by the American College of Medical Genetics. “Care of adults with neurofibromatosis type 1: a clinical practice resource of the American College of Medical […]
Celebrate 30 years with us!
Neurofibromatosis Northeast is turning 30 in 2018 and will be celebrating all year long! Join us as we honor this milestone! Spread the word – Tell 30 people about neurofibromatosis. Host a birthday party – Invite your friends and neighbors over for birthday cake. Donate – In honor of 30 years working […]
Article published in ScienceDaily Reveals Risk Factors for Severe Symptoms in NF1
Research led by Ludwine Messiaen, Ph.D., professor of genetics at the University of Alabama at Birmingham, shows that missense mutations in a cluster of just five codons in the NF1 gene are an important risk factor for severe symptoms of the genetic disease neurofibromatosis type 1. Such information is vital to help guide clinical management […]
A Letter to a Son from his Father
A loving tribute written by a father to his son who has neurofibromatosis. Written by Derek Depelteau Dear Son, The gift you have given to me to become your father is one of the single greatest honors I will ever receive. I am truly inspired each day witnessing your love for life, pursuit of laughter […]
