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!