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Join us to educate others and bring greater attention to NF

NF refers to a group of genetic conditions that cause tumors to grow on nerves throughout the body. The term “NF” includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2), formerly called neurofibromatosis type 2. Throughout the year, especially during NF Awareness Month, the Children’s Tumor Foundation is passionate about working with our supporters to Make NF Visible. We want to make sure the world sees NF, and sees each person living with it.

Map to May: Spreading NF Awareness

May is NF Awareness Month, a time for members of the NF community to harness their power, drive awareness, educate those around them, and raise money to support research that will lead to effective treatments. This "Map to May" is a guide to all the steps you can take to Make NF Visible. Help spread the word that there is no one way to define NF, just like there is no one way to define a person living with NF. Together, we can Make NF Visible for patients with visible signs of NF who struggle to be seen as more than just their NF, and for patients whose NF is invisible who struggle to make others understand.

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Infographic titled "map to may!" promoting awareness activities for neurofibromatosis (nf) awareness month, illustrating a step-by-step path starting with "shine a light on nf" and.

Shine a Light on NF

Shine a Light on NF is a grassroots initiative that brings NF awareness into the community by lighting up homes, buildings, bridges and monuments in blue and green throughout the month of May (NF Awareness Month) or on May 17th (World NF Awareness Day). With your help, a landmark in your town can Shine a Light on NF this May! Click below to see a list of participating locations and download your toolkit to make a request in your city/state.

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Obtain a Proclamation

Obtaining a proclamation from your governor, mayor or city council is a wonderful way to raise awareness about NF.  Click below to see a list participating locations recognizing NF Awareness Month and World NF Awareness Day, and download your toolkit to make a request in your city/state.

Learn More

Share Your Story

Be part of the movement to Make NF Visible by sharing your NF story. Record a video or respond to questions about the visible and invisible aspects of living with NF and the importance of NF Research and what it means to you. Your story will educate and inspire others.

Share your Story

Wear Blue and Green

Wear blue and green on May 17 in honor of World NF Awareness Day and green and blue on May 22 for NF2 Awareness Day! You can get any of our CTF shirts, hats or socks on the CTF Store, or find anything blue and/or green in your closet.

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Share a Fact a Day

We’ve assembled 31 Facts About NF, one to share for each day of NF Awareness Month. These share graphics are ready to post on your social networks and available in English, Spanish, French, Italian, German, and Dutch.

Download Fact Cards

Spread Awareness Year-Round

Making NF Visible is not just about one day or one month. Keep the efforts going year-round to make the greatest impact:

Share NF Facts

Most people have not heard of NF, and some have misconceptions due to the varying ways NF can affect an individual. You can help increase public awareness by educating others about the condition. Visit our Resource Library to download and share facts about NF and the work the Children’s Tumor Foundation is doing to End NF.

Visit Resource Library


Volunteers are a driving force behind the Foundation. In both big ways and small, you can get involved to make a difference in the lives of those living with NF.

Volunteer Opportunities


Although we firmly believe we must do our part in funding and coordinating NF research, we also understand that the federal government plays a very unique and irreplaceable role in supporting these efforts. From writing your government representatives to joining CTF on visits to Capitol Hill, you can help advocate for NF research funding.

Share your Story
A group of people wearing t - shirts that say born to be a fighter.

Make NF Visible Photo Series

In this exclusive collection, we paired people with NF who have manifestations that can be seen with those whose affectations can’t be seen, as a way to highlight the visible and invisible ways NF makes itself palpable in a person’s life. Life with NF can mean living with things like brain tumors and café au lait spots, neurofibromas and learning difficulties, loss of hearing and excruciating pain, successful surgeries, failed clinical trials, physical scars, emotional wounds, cross-country networks, unspoken understanding, and unbroken bonds. It is for these reasons, and so many more, that we strive to Make NF Visible.

View the Entire Series Here
Three women posing for a photo in a t - shirt.
Two boys in blue t - shirts posing for a photo.

Tell Your Story

Every story of NF is important. Hearing about your unique journey helps us better explain what NF is and how it impacts millions of people around the world. Your story also gives hope to the patients and families newly diagnosed and inspires all those fighting to end NF.

Share Your Video Story
Share Your Written Story

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