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New Video: Make NF Visible – Christine, Joel, Salina, and Tyler,

By June 13, 2023February 6th, 2024Awareness, NF2-SWN, Story of NF

The Children’s Tumor Foundation is passionate about working with you, our dedicated donors and friends, to Make NF Visible. We want to make sure the world sees NF and sees each person living with it.

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. Those living with NF often experience symptoms like disfigurement, blindness, deafness, bone abnormalities, learning disabilities, disabling pain, or cancer.

Please watch the video below (captions provided, and transcript below), to meet four incredible people who are making NF visible:

With your help, we can advance our innovations in gene therapy research, investments in biotech, and partnerships with pharmaceutical companies. Important initiatives like these will generate improved treatments, improved care, and improved lives for people living with NF.  CTF has invested in research and care that has led to significant breakthroughs:

  • The NF2-INTUITT clinical trial, which is testing promising drugs for NF2 patients
  • An FDA-approved drug for NF1 inoperable plexiform neurofibromas
  • More than $3 million invested in NF gene therapy
  • Triple the number of clinical trials from a decade ago
  • 10 pharma/biotech companies partnering with CTF to work on NF (there were none just a decade ago!)
  • Innovative studies about NF biomarkers, pain, optic pathway gliomas, and more
  • The world’s largest scientific conference on NF

And we are not done yet! We are counting on your help to continue the life-changing progress that has been made for patients with NF. But there is so much more work to be done.

To donate today, CLICK HERE.


– My name is Christine and I want you to see me, and I want you to see NF.

– My name is Joel and I want you to see me and to see NF.

– My name is Tyler and my mom and I both have NF.

– I was diagnosed with NF2 when I was nine years old after I began having seizures.

– Found out as a little girl. My grandfather hugged me. I think I was around six, seven years old. He found a bump on my arm.

– It took a couple of years for my mom to battle for me to see a neurologist.

– In fact, I didn’t to realize how much I was keeping it a secret until I did my promotional work for my fundraising.

– I hid it. You know, I would wear a lot of long sleeves. Dead summer.

– And I also embraced my own form of it, which is schwannomatosis.

– My biggest fear, even up to now, is for him to go through the pain that I go through. So far, knock on wood, he’s good. He’s nine. He does have café au lait spots, ADHD. It is important to make NF visible because of the way it affects everyone different, whether it may be NF1, NF2, or schwannomatosis.

– Had a tumor removed from the back of my leg in 2010. It left me with foot drop for over a year, but I did find a way to continue to run. Since then, I’ve run 14 marathons.

– NF shouldn’t stop us from pursuing our dreams and to me it doesn’t. And others should know that just because we have a disease that is challenging, we can succeed in life.

– My mom is a fighter, is that, when she’s in pain, she really doesn’t complain. So she could keep me happy and not worried.

– The spirit of this shirt is something people can’t see directly and know what the source of my strength is.

– It means that I was born with NF.

– Strangely, having this disorder has shown me a strength I had not imagined I could have.

– As an almost deaf individual with no hearing in my left ear and very little in my right ear, I’m trying to embrace the fact that I’m going to be deaf soon, and yet this is another challenge but I am going to overcome it.


To donate today, CLICK HERE.