Stories of NF

Thank you for sharing your Story of NF

The Children’s Tumor Foundation works to increase knowledge of neurofibromatosis and schwannomatosis, and you - our NF Heroes - have an important role to play. We’re looking to collect as many Stories of NF as possible for potential future use on the CTF website, newsletters, social media, patient brochures, advocacy efforts, and more. NF may be complicated, but these stories help us better explain what NF is and how it impacts millions of people around the world. Every story of NF is important. We want to know you--your personality, what you do, and what you wish for. Thank you for sharing your story with us!

While we cannot guarantee use and publication of every story, we will be in touch prior to publishing anything you've shared here.

NF HERO STORY

Please answer the questions below as completely as you like. Please understand that we may only use a portion of what you submit, and we cannot guarantee that every story submitted will be featured.

NF Hero Name*

Submitted by (your name)*

For the purpose of this form, an NF Hero has a diagnosis of NF. If you are filling out this form on behalf of someone else, please enter your name below.

Your relationship to this NF Hero:

If you are submitting on behalf on an NF Hero, please indicate how you know this NF Hero or are related.

Your contact information

For follow up questions only.You will not be added to any mailing lists by adding your email and mailing address here.

Email address*

Phone*

City*

State*

What type of NF do you have?*

NF1

Schwannomatosis

NF2-related Schwannomatosis

NF Hero Date of Birth*

Gender? (optional)

Race/Ethnicity (optional)

Tell us about the early days of your diagnosis.*

How does living with NF impact your life? How does it impact the plans you have for your future?*

Has there been a defining moment in your NF journey?*

NF Heroes are more than their NF, so tell us a little more about yourself, what you do for a living, and what makes you happy!*

What is your favorite song?*

What is a fun fact about yourself you want people to know?*

What is your favorite food?*

If you could have any superpower, what would it be?*

Are you currently participating on a clinical trial? Have you in the past?

We'd love to hear about your experience. Please share as much, or as little, as you'd like. If you have photos taken before and after, please attach at the bottom of the form.

Current/Past participants

Are you currently (or have you recently) participated in a CTF program, such as Shine a Light NF Walk, NF Endurance, Classrooms That Care, Youth Development, NF Camp, Fight NF Your Way and/or a Patient Engagement opportunity? Please share here.

ATTACHMENTS*

Please submit as many photos of yourself (or of the Hero you are submitting) as you would like to share with us. The pictures that are most useful are more than 1MB in size. This can be accomplished with a smart phone or camera. Photos received from a text message or on Facebook are generally too low-resolution for us to use.

Drag and drop files here or

One of my photos is a clear portrait or selfie of the NF Hero*

How did you hear about this form to share your NF story?

Facebook

Other social media

ctf.org blog

CTF staff

By filling in the form above, I am giving the Children’s Tumor Foundation permission to share the attached photos and submitted information on the CTF website, blog, social media, brochures, newsletters, and other media. I also understand that submitting this information is not a guarantee that this story will be featured.

I agree to share my NF Hero Story!*

Thank you for sharing your story with us!

Send me a copy of my responses

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