Neurofibromatosis Northeast

Supporting the NF community in New England and New York

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You are here: Home / Creating Awareness / Help Spread Awareness

Help Spread Awareness

Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined, yet most people have never heard of it.

Many people have trouble pronouncing neurofibromatosis.

Every day we are encouraging people to participate in our #TheWordIs campaign to generate more awareness of neurofibromatosis and the people this disorder affects. Our goal is to spread the word “neurofibromatosis” across social media so that it is known in every household.

How you can participate:

1. Record a video of yourself saying “neuro-fibroma-tosis” (do your best!). Post it to social media, then tag Neurofibromatosis Northeast! When you post your video, use the text box to challenge your business associates, friends and family to do the same. Get them to join you and have fun with it – we know it’s a tough word to say!

2. Purchase a #TheWordIs T-Shirt or sweatshirt! Wearing them around town will help us spread more awareness!

*Please note, these T-shirts run small. Order at least one size up!

Sweatshirts run true to size.

3. Tag us on social media when posting videos or photos of you in the #TheWordIs T-Shirt or sweatshirt! And don’t forget to include our hashtag, #TheWordIs!

For Twitter, use @NFNortheast.

For Facebook, use @NFincNE.

For Instagram, use @nfnortheast.

You can also link back to nfnortheast.org, spread important information about neurofibromatosis, or share your own experiences.

4. Share your story by allowing us to highlight you as an NF Champion! Email our office at info@nfnortheast.org for more information!

5. Add the #TheWordIs Twibbon to your photo as is shown above.

6. Download an NF Background to use on ZOOM and Skype. There is a variety to choose from. Here is a sample….

 

7. Of course, the easiest way to help is to DONATE.

Remember, #TheWordIs Neurofibromatosis!

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Friends of NF Northeast

Upcoming Events

  • Yoga in Solidarity for World NF Awareness Day on May 17, 2022 4:30 PM
  • Steps2Cure NF Walk/Fun Run – Wakefield MA on May 22, 2022 11:00 AM
  • Steps2Cure NF Walk – Western NY on June 4, 2022 12:00 PM
  • Falmouth Road Race – Team NF Northeast on August 21, 2022
  • 11th Coast to the Cure on September 10, 2022 8:00 AM

SEARCH NFNORTHEAST.ORG

Office | Phone | Map

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

Webpage Services

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

NF Northeast Continues to Need Your Support

During the COVID-19 pandemic all of our events were cancelled or postponed. But, our programs that serve NF patients and families were not stopped. We continued to be here for our community, and now we continue to need your support. Thank you!

SPREAD THE WORD

Events

  • Yoga in Solidarity for World NF Awareness Day on May 17, 2022 4:30 PM
  • Steps2Cure NF Walk/Fun Run – Wakefield MA on May 22, 2022 11:00 AM
  • Steps2Cure NF Walk – Western NY on June 4, 2022 12:00 PM
  • Falmouth Road Race – Team NF Northeast on August 21, 2022
  • 11th Coast to the Cure on September 10, 2022 8:00 AM

Introducing Sharon Klein

We are pleased to announce that Sharon Klein has joined Neurofibromatosis Northeast as our Executive … [Read More...]

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