Rozalinda was just 21 years old when she received life-altering news that would reshape her world. “It was the most challenging day of my life,” she recalls of July 21, 2023. Initially seeking help for hearing issues, she was given a surprising diagnosis: NF2-related schwannomatosis, or NF2-SWN. “We found two acoustic neuromas after my MRI,” she explains, “and then two more in my spinal cord. Six months later, I did another MRI, and we found ten more tumors. That was a BIG SHOCK!” With no family history of the disorder, Rozalinda faces the immense hurdles of living with NF2-SWN, including profound hearing loss, balance issues, and a debilitating, constant ringing in her ears.
This diagnosis and its consequences would daunt anyone, yet Rozalinda’s strength shines through. “I’m afraid every day of what’s coming,” she says, “but I’m grateful that I’m still standing and fighting it.” For Rozalinda, life with NF2-SWN means changing plans, reconsidering her dreams, and re-evaluating her future. But she refuses to let the diagnosis steal her spirit. “I love dancing, music, and fashion,” she says. “I can’t even go to my MRI if my outfit isn’t perfect!” she adds with humor. Rozalinda’s zest for life is matched by her resilience in facing NF2-SWN.
Hope is on the horizon for patients with NF2-SWN
For Rozalinda and others with NF2-SWN, hope is on the horizon thanks to brigatinib, a promising new treatment currently being tested in clinical trials. Brigatinib represents not only a scientific breakthrough but also a milestone as it is being tested in INTUITT for NF2, the first platform clinical trial for NF. This collaborative clinical trial brings together diverse institutions and experts to address a rare and relentlessly progressive condition. Developed with support from the Children’s Tumor Foundation and led by Massachusetts General Hospital and a multi-institutional global research team, the brigatinib trial aims to address the array of tumors that arise in NF2-SWN patients.
“I read about the treatment,” Rozalinda says. “It really gives hope. I hope so because we NF patients deserve another chance in life and to really win this battle.” Without CTF’s laser-focused drive to find treatments faster, this discovery might never have been identified for patients like Rozalinda.
Brigatinib’s path to NF2-SWN trials was paved through Synodos for NF2, a collaborative research initiative launched by the Children’s Tumor Foundation. The Synodos project, which united specialists and resources to advance NF research, was pivotal in identifying brigatinib as a potential treatment for NF2-SWN. This collaborative effort was instrumental in fostering the partnerships that enabled the trial to move forward. In recent findings published earlier this year in the New England Journal of Medicine, the trial, led by Dr. Scott Plotkin at Massachusetts General Hospital, showed that brigatinib shrunk 10% of growing tumors and 23% of all tumors.
Even more promising, some patients reported improved hearing and reduced pain, offering a glimpse into the possible benefits this treatment might bring.
For Rozalinda, who faces daily challenges with strength and determination, brigatinib could be life-changing. Her story reflects both the trials and the hope that comes with living with NF2-SWN, and her courage shines through as she continues to move forward, living boldly and beautifully even amidst uncertainty. “NF made me appreciate life more,” she says, “and love myself more and more to the level that I now adore myself. I protect myself, and I’m my number one priority.”
The Promise of a Life Without Fear
For Rozalinda, brigatinib is more than just a potential treatment; it’s a promise of a future where she can keep dancing, keep dreaming, and perhaps, one day, live without fear.
Thanks to the unwavering support of you, donors and friends of the Children’s Tumor Foundation, patients like Rozalinda may soon have more than just courage to face their future—they may have options.
Please help us keep this progress moving forward for patients like Rozalinda. Your donation today offers hope for a better tomorrow. Donate at ctf.org/donate.
