Neurofibromatosis Northeast

Supporting the NF community in New England and New York

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You are here: Home / Creating Awareness

Creating Awareness

Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined yet most people have never even heard of it. We are trying to change that!  NF’s virtual anonymity in the eye of the general public has limited our volunteer development, fund raising capabilities and, more importantly, our ability to effectively serve as a resource to newly diagnosed NF patients and their families.

Governor with Group
Governor Shumlin of Vermont

Determined to make neurofibromatosis a household word, we have launched an ongoing public awareness campaign using #TheWordIs and encouraging people to say the word!

We conduct numerous educational, social and fundraising events throughout the year and we sponsor and attend medical conferences.

We also look for other opportunities for media exposure such as the “Neurofibromatosis Awareness Month” proclamation signings by all of the Governors in the Northeast.

We also created the “Beauty Mark Nation”. In a lighthearted and fun way the Beauty Mark Nation will command public attention, challenge public perception and create a high degree of visibility for the NF cause. This bold commitment will ultimately bring us closer to the cure for NF! Get your tattoos and help us spread awareness and get people to talk about neurofibromatosis.

Click here to see many ways you can help spread awareness.

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Friends of NF Northeast

Upcoming Events

  • Steps2Cure NF VIRTUAL Walk & Run on May 1, 2021 7:00 AM
  • NF Northeast Coffee Chat on May 9, 2021 9:00 AM
  • NF Northeast Coffee Chat on June 13, 2021 9:00 AM
  • NF Northeast Coffee Chat on July 11, 2021 9:00 AM
  • NF Northeast Coffee Chat on August 8, 2021 9:00 AM

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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!

SPREAD THE WORD

Events

  • Steps2Cure NF VIRTUAL Walk & Run on May 1, 2021 7:00 AM
  • NF Northeast Coffee Chat on May 9, 2021 9:00 AM
  • NF Northeast Coffee Chat on June 13, 2021 9:00 AM
  • NF Northeast Coffee Chat on July 11, 2021 9:00 AM
  • NF Northeast Coffee Chat on August 8, 2021 9:00 AM

College Scholarship Application

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

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