Neurofibromatosis Northeast

Supporting the NF community in New England and New York

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Who We Are

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, 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 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.    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 the NF Clinics at Massachusetts General Hospital and Boston Children’s Hospital 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 six employees and a bookkeeper:

   

Karen Peluso
Executive Director
kpeluso@nfnortheast.org

Diana Flahive
Director of Operations and Events
dflahive@nfnortheast.org

   

Anne Patterson
Patient and
Clinic Outreach Coordinator
supporting New York
and the Tri-State Area
apatterson@nfnortheast.org

Jillian Black
Development Officer
jblack@nfnortheast.org

 

 

 

 

Jennifer Brickley
Development Associate
jbrickley@nfnortheast.org

Jenny McDonald
Gift Processor and
Data Entry Coordinator
jmcdonald@nfnortheast.org
 

Michelle Gaffney
Bookkeeper
mgaffney@nfnortheast.org

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Friends of NF Northeast

Upcoming Events

  • Rochester, NY NF Families and Community Gathering on February 17, 2019 3:00 PM
  • Rare Disease Day 2019 on February 28, 2019 9:00 AM
  • 5th Annual Awareness Is Key – Comedy Night on March 2, 2019 7:00 PM
  • NF Symposium for Patients and Caregivers on March 30, 2019
  • 20th Annual Table for TEN on April 3, 2019 6:00 PM

Our Impact

SEARCH NFNORTHEAST.ORG

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Webpage Services

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

Connect With Us

  • Email
  • Facebook
  • Instagram
  • LinkedIn
  • Twitter
  • YouTube

Our Impact

Events

  • Rochester, NY NF Families and Community Gathering on February 17, 2019 3:00 PM
  • Rare Disease Day 2019 on February 28, 2019 9:00 AM
  • 5th Annual Awareness Is Key – Comedy Night on March 2, 2019 7:00 PM
  • NF Symposium for Patients and Caregivers on March 30, 2019
  • 20th Annual Table for TEN on April 3, 2019 6:00 PM

Office | Phone | Map

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

Community Spotlight

Eighty three advocates from twenty three states descended on Capitol Hill on February 11th and 12th, … Learn more

Copyright © 2019 · Neurofibromatosis Northeast · 9 Bedford Street · Burlington MA 01803 · Map & Directions

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