Who We Are

Neurofibromatosis, Northeast is a non profit 501(c)(3) organization incorporated (as Neurofibromatosis, Mass Bay Area) in 1988 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.

NF Northeast is affiliated with the national organization, The NF Network.

The Mission of NF Northeast is to find a treatment and the cure for neurofibromatosis by promoting scientific research, creating awareness, and supporting those who are affected by NF.

According to audited financial reports our functional expenses are broken down as follows:

Programs 81%

Management 12%

Fundraising 7%

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 financial documents, please see our 990 tax form and our auditors report.

We are a prominent voice on Capitol Hill, and as a direct result of our advocacy the United States Congress has appropriated over $230 million for federally funded NF research since 1996. See What We Do. Locally, we have awarded $3 million to NF clinicians and scientists who are dedicated to treating NF patients. See list of recipients here. 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).

We have made a multi year commitment to support the Harvard Medical School Center for NF and Allied Disorders (CNfAD). The Center includes clinical research at both Massachusetts General Hospital and Children’s Hospital Boston, basic science research, patient databases, tissue collection, diagnostic development projects, and most important, collaboration and cooperation which will accelerate the search for a treatment and cure for NF.

We are also dedicated to making neurofibromatosis a household word and have recently launched a comprehensive public awareness campaign.

NF, Inc., NE 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.

NFNE has four employees: