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 Diana at dflahive@nfnortheast.org for more information!

 

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

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

Remember, #TheWordIs Neurofibromatosis!

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Friends of NF Northeast

Upcoming Events

  • Providence Bruins Neurofibromatosis Northeast Night! on March 8, 2020 3:05 PM
  • 6th Annual Awareness Is Key – Comedy Night on March 28, 2020 7:00 PM
  • 21st Annual Table for TEN on March 31, 2020 6:00 PM
  • Fighting NF at Fenway Park on May 24, 2020 7:05 PM
  • 10th Annual Coast to the Cure NF Bike Ride on September 12, 2020 6:30 AM

SEARCH NFNORTHEAST.ORG

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

SPREAD THE WORD

Events

  • Providence Bruins Neurofibromatosis Northeast Night! on March 8, 2020 3:05 PM
  • 6th Annual Awareness Is Key – Comedy Night on March 28, 2020 7:00 PM
  • 21st Annual Table for TEN on March 31, 2020 6:00 PM
  • Fighting NF at Fenway Park on May 24, 2020 7:05 PM
  • 10th Annual Coast to the Cure NF Bike Ride on September 12, 2020 6:30 AM

Community Spotlight

Justin T. Jordan, MD, MPH has joined the NF Northeast Board of Directors. Dr. Jordan is an Assistant … Learn more

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