When Stephanie and Matthew Reeve welcomed their daughter Kendall into the world, they sensed something was different. As a nurse, Stephanie’s instincts told her to look closer. But doctors reassured her—perhaps she was just being overly concerned. Still, she couldn’t shake the feeling that something wasn’t right.
At just 10 weeks old, Kendall was diagnosed with neurofibromatosis type 1 (NF1), a rare genetic condition that causes tumors to grow on nerves. An MRI revealed tumors wrapped around her spine, bladder, and stomach. A geneticist confirmed what Stephanie had feared. Kendall had NF1.
Stephanie leaned on her nursing background to navigate the complexities of her daughter’s con dition, seeking information and support from organizations like the Children’s Tumor Foundation (CTF).
What followed were years of surgeries, chronic pain, and limited mobility that kept Kendall confined to her bed, unable to enjoy the childhood every child deserves.
But then something remarkable happened—made possible with your help.
Kendall began taking Koselugo, the first-ever FDA-approved treatment specifically for NF1 tumors. This breakthrough medication didn’t just appear overnight. It was the result of years of strategic investment in research that the Children’s Tumor Foundation championed—research that donors like you funded.
“Before Koselugo, I was in so much pain. I couldn’t get out of bed, and I couldn’t do things,” Kendall recalls. “When I started taking it, I noticed that I wasn’t hurting as much anymore. I felt like I could do a lot more things. I just felt free—like I was weightless, and my pain couldn’t stop me.”
Our family of Children’s Tumor Foundation donors funded the critical research that led to this moment. CTF’s strategic investments in MEK inhibitor research and scientific collaboration created the foundation for Koselugo’s historic FDA approval in 2020—the first-ever approved treatment for NF1 plexiform neurofibromas. More recently, this support helped advance Gomekli, a second FDA-approved treatment for NF, expanding options for patients like Kendall.
With Koselugo, Kendall’s tumors have stabilized, and her pain has diminished significantly. Now 14 years old (soon to be 15), she is able to attend school regularly, engage with friends, and embrace a more typical teenage life—a transformation that your donations helped make possible.
More breakthroughs are on the horizon for all types of NF:
Brigatinib, originally developed for lung cancer, is showing promise for NF2-related schwannomatosis. NFX-179, a topical gel for NF skin tumors, is entering final trials. And HLX-1502, the first AI-discovered NF therapy, is now in clinical testing.
Pharmaceutical companies are now interested in NF, investing in research that will lead to even more treatments for all forms of NF. What once seemed impossible is now within reach.
Kendall's Message: Don't let NF stop you
Despite the medical challenges she has faced, Kendall does not let NF1 define her. She loves singing, listening to music, and playing games on her iPad. She loves to read and enjoys swimming whenever she gets the chance.
Her message to others is clear: “Don’t let NF stop you.”
Thanks to groundbreaking treatments, relentless advocacy, and a supportive community of donors like you, Kendall is forging her own path. And with every step, she is proving that NF may be a part of her story—but it will never be the whole story.
Your donation today helps fund more treatments for all types of NF, giving children and adults living with NF the chance to define their own stories beyond NF.
You are the key to unlocking more treatments—and one day, a cure—for all forms of NF.
