Neurofibromatosis, Inc., Northeast is a non profit 501(c)(3) organization incorporated (as Neurofibromatosis, Inc. 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, Inc., Northeast was adopted to better describe the area we serve: Massachusetts, Maine, New Hampshire, Vermont, Connecticut, Rhode Island and New York.
NF, Inc., NE is affiliated with a national organization, Neurofibromatosis, Inc. and we are members of the advocacy group, The National NF Coalition.
The Mission of NF, Inc., NE 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 2008 990 tax form and our auditors report.
Since our inception we have awarded almost $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). 
In partnership with the National NF Coalition, we work with congressional representatives on both a local and national level to encourage continued and increased federal funding of NF research. See What We Do.
We have made a multi year commitment to support the newly formed Harvard Medical School Center for NF and Allied Disorders (CNfAD). The Center includes clinical research, 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.
NF, Inc., NE has three employees:
Karen Peluso, Executive Director
kpeluso@nfincne.org
Linda Yew, Executive Associate and Outreach Coordinator
Sonja Nathan, Special Events Director snathan@nfincne.orgNF, Inc., NE, is fortunate to have many loyal volunteers. We are governed by a Board of Directors and we have an Honorary Board of Trustees.
