The Mission of Neurofibromatosis Northeast is to find treatments and the cure for neurofibromatosis (NF) by promoting scientific research, creating awareness, and supporting those who are affected by NF.
Neurofibromatosis Northeast is a non profit 501(c)(3) organization incorporated in 1988 (as Neurofibromatosis Mass Bay Area) by a group of people who were in some way affected by the genetic disorder known as neurofibromatosis (NF).
In recent years the name Neurofibromatosis Northeast was adopted to better describe the area we serve: Massachusetts, Maine, New Hampshire, Vermont, Connecticut, Rhode Island and New York.
Neurofibromatosis Northeast is affiliated with the national organization, The NF Network.
Fundraising 5% Management 15% Programs 80%
We have twice been featured in the Catalogue for Philanthropy where we are described as “a highly efficient and worthy medical research charity in which you, too, can make a difference.” see What We Do
For more information about our financials, please see the Giving Common.
We are a prominent voice on Capitol Hill, and as a direct result of our advocacy the United States Congress has appropriated over $500 million for federally funded NF research since 1996. See What We Do.
Using a Peer Review Grant Process we provide support to NF clinicians and researchers who may subsequently apply for larger grants from the US Army NF Research Program (CDMRP) or the National Institutes of Health NIH.
Through support of the NF Clinics at Massachusetts General Hospital and Children’s Hospital Boston we help provide services and resources for NF patients and families.
We are also dedicated to making neurofibromatosis a household word and have recently launched a comprehensive public awareness campaign #TheWordIS
NFNE raises 70% of our funds at events, we receive no direct government support. We rely on corporations, foundations, and individuals.
NFNE is governed by a Board of Directors and fortunate to have many loyal volunteers.
NF Northeast has five employees and a bookkeeper: