Neurofibromatosis Northeast

Supporting the NF community in New England and New York

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You are here: Home / Who We Are

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 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, 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.” see What We Do

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. See What We Do.    John and Leah capital hill 2014

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:

Karen Peluso
Executive Director
kpeluso@nfnortheast.org
Diana Flahive
Director of Operations and Events
dflahive@nfnortheast.org
Unfortunately, due to the COVID-19 pandemic, NF Northeast was forced to furlough some of its employees. We hope that this reduction in staff is only temporary. Please be assured that the programs of NF Northeast are continuing at this time, and we are still here to be a resource for NF patients and their families.

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Office | Phone | Map

9 Bedford Street, Burlington, MA 01803
☎ 781-272-9936 | Map & Directions

New York Office, 140 Kirkwood Drive, East Aurora, NY 14052
☎ 716-949-4838 |

Webpage Services

Donated by the Klouda Family.
In loving memory of Richard Klouda, 1964 – 2017

NF Northeast Continues to Need Your Support

Due to the COVID-19 pandemic most of our events have been cancelled or postponed. But, our programs that serve NF patients and families have not stopped. We continue to be here for our community and continue to need your support. Thank you!

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College Scholarship Application

NF Northeast offers college scholarships for individuals who have neurofibromatosis and are … [Read More...]

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