Neurofibromatosis (NF) is a genetic disorder that causes uncontrolled tumor growth anywhere on or in someone’s body. The mission of Neurofibromatosis Northeast (NF Northeast), a 26 year old 501c3 organization, is to find treatment and a cure for NF through the promotion of scientific research, advocacy, creating awareness about the disorder and supporting NF families who are affected by this debilitating condition. NF Northeast, part of the national NF Network, serves NF patients and families throughout the New England region and New York.
Neurofibromatosis is more prevalent than cystic fibrosis and muscular dystrophy combined, yet it is a relatively unknown disorder. Symptoms vary widely and can include disfigurement, learning disabilities, visual impairment, seizure, brain tumors, deafness and cancer.
NF Northeast has three main pillars in support of its mission. They are: Medicine and Science, Public Awareness and NF Families & Community. Within Medicine and Science, our aim is to expand and deepen support for scientific and medical research and clinical work. In support of that, NF Northeast has made multi-year financial commitments to the Harvard Medical School Center for NF and Allied Disorders. The Center engages in clinical and scientific research at Boston Children’s Hospital and Massachusetts General Hospital, and maintains patient databases, tissue collections, and diagnostic development projects. NF Northeast is also considered a powerhouse in terms of national advocacy efforts at the Federal level where the organization has been a driving force in helping to secure over $500 million in appropriations that have gone to NF research.
Public Awareness activities include ongoing campaigns using print, radio, social media and other vehicles to help bring NF into the mainstream. NF Northeast also conducts educational, social and fundraising events through the year to highlight the disorder and help lessen the stigma attached. NF Northeast also sponsors and attends medical conferences to increase awareness and maintain visibility in the public eye.
In support of our NF Families & Community, we are the “go to” organization for newly diagnosed patients and their families. We help provide them with information, support, referrals and if sought, introductions to others living with NF. Over the years, the NF Community has relied on NF Northeast for support and understanding and has been a galvanizing force in the search for the cure.