The Children's Tumor Foundation
09/12/2025 | Press release | Archived content
Story of NF: Families Support Their Warriors
Story of NF: Families Support Their Warriors
September 12, 2025NF1, NF2-SWN, Story of NF
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NF doesn't just affect the individual living with it; it touches the entire family. Behind every young adult battling NF, there are parents who advocate, support, and fight right alongside them.
These reflections were originally submitted to our 2025 I Know a Fighter photo contest and are now being featured as part of our ongoing Story of NF series. These comments, shared by parents of young adults living with NF, are a reminder of just how strong and resilient our community truly is. Your courage fuels hope for us all.
A person in athletic wear stands with arms outstretched under a blue, white, and green balloon arch outdoors near a lake and mountains."We still fundraise every year."
We participated in the Denver NF Walk every year, until it became too difficult for my son Ryan to see and walk that far. The sunset and mountain backdrop were always so beautiful, and I wanted to show off his strength in fighting NF2-SWN. He had brain surgery in 2016 to remove a tumor the size of a baseball, and since then has been on treatments like Avastin and, more recently, Brigatinib, which has helped slow the growth of his spine and brain tumors. We're incredibly grateful for the research supported by CTF and the amazing care team at Children's Hospital Colorado. It's why we've proudly continued fundraising for 15 years.
- Michelle K.
A young person in a beige t-shirt and black cap stands outdoors in front of a graffiti-covered brick wall."I'm so proud of the young man he's become."
This is my handsome Evan Riley, age 16. This is the first year he's been leading the way in NF awareness, and I'm so proud of the young man he's become. Diagnosed with NF1 at just 8 months old, Evan is currently fighting spinal tumors and will likely begin Koselugo treatment soon. We took this photo of him proudly wearing his ENDNF cap.
- Krystena R.
A man wearing a bib sits at a restaurant table with a plate of fries, grilled meat, salad, and sauces in front of him, holding a fork and looking at his food."He's like a Viking, a real fighter."
My son, Rune, was diagnosed with NF2-SWN five years ago, at the age of 15. Back then, he was functioning normally, but in just five years, he's lost his hearing, most of his sight, and his ability to walk. And yet, through it all, he never lost his motivation. He's like a Viking, a real fighter.
- Chantal D.
A young woman with curly hair stands on a porch, smiling, wearing a navy hoodie that says "BORN A FIGHTER." Outdoor greenery and garden ornaments are visible in the background."She shows up with strength."
Our daughter was born a fighter. She lives with LZTR1-related schwannomatosis and deals with pain every single day. Still, she plays softball, shows up with strength, and even gave her tumor a name: Toni.
- Stephanie F.
If you have a story to share, we'd love to hear it; every voice helps build a stronger, more connected NF community.
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The Children's Tumor Foundation published this content on September 12, 2025, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on September 16, 2025 at 14:06 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]