Who We Are

Our Vision:

A world where the burden of neurofibromatosis does not exist.

Our Mission:

To bring hope to those affected by neurofibromatosis and allied disorders.

Patients and families are at the heart of NF Northeast’s mission. We provide advocacy, support, and awareness while promoting research and enhanced clinical care.

Neurofibromatosis Northeast is a non profit 501(c)(3) organization incorporated in 1988 (as Neurofibromatosis Mass Bay Area) by Bert and Karen Peluso along with other patients and families 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, Pennsylvania, New Jersey and New York.

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

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

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.”

For more information about our financials, please see Guide Star.

We are a prominent voice on Capitol Hill, and as a direct result of our advocacy the United States Congress has appropriated over $600 million for federally funded NF research since 1996.

Locally, we have awarded over $3 million to NF clinicians and scientists who are dedicated to treating NF patients. See a 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.

Through support of NF Clinics including Massachusetts General Hospital, Boston Children’s Hospital and Albany Medical Center we help provide services and resources for NF patients and families.

We are 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.

Staff: