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New York Stock Exchange 2024
Leanna was just 16 years old when her future took an unexpected turn. Then a dedicated ballerina, she believed the sharp pain in her hip was a dance injury. But when physical therapy didn’t help, an MRI revealed something far more serious: a large tumor in her lower spine. “That scan changed my life,” Leanna recalls. It took two surgeries to remove the tumor, which left her in a wheelchair and led to further imaging—and the discovery of more tumors. Genetic testing confirmed a diagnosis of NF2-related schwannomatosis, or NF2-SWN.
Strength, redefined
Living with NF2-SWN means making constant adjustments—both large and small. Leanna’s most recent surgery, to remove a vestibular schwannoma, resulted in facial paralysis and deafness in one ear. “The hardest part has been the emotional side of facial paralysis,” she shares. “You’re forced to see yourself differently, and that’s a journey all its own.” But through every surgery—thirteen tumors removed in total—Leanna’s resilience shines. Her mom has been by her side for each one, offering strength and presence during the hardest moments.
A breakthrough for the NF2-SWN community
While Leanna has not received the drug herself, she is encouraged by the promise of brigatinib, a treatment now being tested in the first-ever platform
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New York Stock Exchange 2024
clinical trial for NF2-SWN. The drug, originally developed for lung cancer, was identified through the Children’s Tumor Foundation’s Synodos for NF2 research collaboration as a potential treatment for this relentlessly progressive condition. Brigatinib is now being studied in the CTF-funded INTUITT-NF2 platform trial led by Massachusetts General Hospital and including NYU, Johns Hopkins, Mayo Clinic, UCLA, and others.
Recent results published in the New England Journal of Medicine showed that brigatinib shrank some NF2-SWN tumors and, in some cases, improved hearing and reduced pain. It’s a hopeful development for the NF2-SWN community—and one that patients like Leanna are cheering on, even from the sidelines.
“I know how much every step forward means,” Leanna says. “I’m thrilled about the promise of brigatiib, and neratinib, another drug being tested in the INTUITT-NF2 trial. I’m proud and excited to know that CTF is accelerating the path toward more treatments for NF2-SWN. Because we deserve options, and we deserve hope.”
Finding purpose through NF Endurance
NFE NYC Half 2024
What began as a solo hobby during the pandemic has grown into a personal mission. “Running started as a way to get outside and enjoy myself,” she says. “Now every race reminds me of how strong I am despite everything.” Leanna’s first encounter with CTF’s NF Endurance team was emotional—spotting another runner with “End NF” on their shirt brought her to tears. “It was the first time I felt seen,” she says.
Today, Leanna is the 2025 NF Ambassador and recently ran for CTF in the London Marathon on April 27. Later this year, she will run the Berlin and New York City marathons, proudly representing the NF community and raising awareness every step of the way.
Leanna adapts to life with NF2-SWN with grace and determination. She moved to an apartment with an elevator, uses a vibrating alarm clock, and schedules life meticulously to balance full-time work, advocacy, and marathon training.
Running forward, not alone
Leanna has become a powerful voice for the NF2-SWN community. Through her social media, she shares the highs and lows—surgery recoveries, advocacy events, and moments of reflection—building awareness for NF and helping others feel less alone.
“Accepting this kind of diagnosis isn’t easy. We all go through our own trials to reach acceptance. But no matter how we get there or how long it takes us, there is a community waiting to welcome you.”
VLC Meeting 2024
In her role as NF Ambassador, she hopes to inspire others to embrace their journey. “I want people to see that life with NF2-SWN can still be full,” she says. “Full of meaning, of movement, and of joy.”
Your support fuels this progress
Breakthroughs like brigatinib are only possible because of people like you—donors who believe in a future where NF patients have real treatment options. Your gift powers research, supports patients, and helps advocates like Leanna run, speak, and lead with courage.
Help us move forward—for Leanna, and for all those living with NF2-SWN.
