Neurofibromatosis Northeast

Supporting the NF community in New England and New York

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You are here: Home / Who We Are / What We Do / How You Can Help

How You Can Help

Help promote government funding of NF research

Since 1996, NF Northeast has been an active member of the National NF Network, an advocacy group that works with Congress to promote government funding of NF research. See What We Do. It is important to note that this funding goes to scientists who apply for grants through a peer review process. NFNE receives no government funds.

You can help by writing to your representatives in the House and Senate and tell them that you want continued, and increased funding for NF research at both the National Institutes of Health NIH and the Department of Defense’s Congressionally Directed Medical Research Program CDMRP.

Here is a sample letter for you to use.

To find your representatives in Congress click here, and please take advantage of our Advocacy Toolkit

Talk About Neurofibromatosis

One of the biggest obstacles we face in providing support for NF patients and families is the lack of knowledge about neurofibromatosis.  Talk to everyone you know about neurofibromatosis.  Teach them how to pronounce it: neuro-fibroma-tosis.  Let them know that NF affects more people than muscular dystrophy and cystic fibrosis combined.  Tell your friends and family about NF research, and it how it will help anyone suffering from similar symptoms.  The more we spread the word about neurofibromatosis, the more we are helping each other.

Plan a Fundraiser

NF Northeast depends on support from people like you; 75 percent of our income comes from events and fundraisers, which means we need your help to raise money.  Consider planning a small event in your community, such as a bake sale, or a spare change collection drive on behalf of Neurofibromatosis Northeast.  Or, perhaps you could organize a golf tournament or road race.  Many of  our friends have set up their own fundraising websites – click here to see how easy and effective they are. Need an idea?  Call the office, or email us for suggestions. Read more about Do It Yourself Events.

Donate your vehicle to NF

NF Northeast will accept vehicle donations.  For more information open this vehicle donation form.

Recycle cartridges and cell phones for NF

We recycle through the FundingFactory www.FundingFactory.com. Our ID# is 43816. You can either save your cartridges and cell phones and deliver them to our office, or if you have a business, you can register with FundingFactory and provide our ID# 43816 as the charity to benefit from your recycling. They will provide the shipping boxes and everything you need to start recycling. There is no cost for you to participate. To become a business supporter you can register on their website or call FundingFactory at 888-883-8237

Donate to NF

Your support is sincerely appreciated and will assist us in our mission to find an effective treatment and the cure for NF.  Please make checks payable to NFNE and mail to:

NF Northeast
9 Bedford Street
Burlington, MA 01803

Speak with us directly at 781-272-9936

You can make a secure electronic donation immediately by clicking the button below. For more details about how your donations help please visit our DONATE page.

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Friends of NF Northeast

Upcoming Events

  • NF Northeast Coffee Chat on March 14, 2021 9:00 AM
  • Vine & Virtual on April 8, 2021 8:00 PM
  • NF Northeast Coffee Chat on April 11, 2021 9:00 AM
  • NF Northeast Coffee Chat on May 9, 2021 9:00 AM
  • NF Northeast Coffee Chat on June 13, 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

  • NF Northeast Coffee Chat on March 14, 2021 9:00 AM
  • Vine & Virtual on April 8, 2021 8:00 PM
  • NF Northeast Coffee Chat on April 11, 2021 9:00 AM
  • NF Northeast Coffee Chat on May 9, 2021 9:00 AM
  • NF Northeast Coffee Chat on June 13, 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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