For Lashonda, neurofibromatosis type 1 (NF1) is more than a diagnosis—it’s her family’s legacy. Born with NF1, Lashonda grew 
up watching her mother navigate the disorder’s relentless challenges. Her mother’s battle took a devastating turn when she developed malignant peripheral nerve sheath tumors (MPNSTs), an aggressive cancer that ultimately claimed her life. Years later, Lashonda faced the same terrifying MPNST diagnosis herself.
“Seeing my mom suffer from MPNST was one of the hardest things I’ve ever been through,” Lashonda recalls. “When I was diagnosed, it felt like history repeating itself. I couldn’t help but wonder if there was anything I could have done sooner—anything that could’ve made a difference.”
For Lashonda and others living with NF1, MPNST is a looming fear. It affects 7-15% of NF1 patients, often remaining undetected until it’s too late for effective intervention. “The idea that a simple blood test could predict whether a tumor is turning malignant—that’s incredible. It could give people like me and my mom a fighting chance,” Lashonda says.
This potential lifesaver is the focus of a groundbreaking biomarker study funded by the Children’s Tumor Foundation (CTF). Announced in 2022, the three-year, nearly $2 million initiative is developing a DNA-based blood test capable of identifying cancer risks in NF1 patients earlier than ever before.
A Vision for the Future
The biomarker study is led by Taylor Sundby, MD, alongside principal investigators Drs. Angela Hirbe, John Shern, and Aadel Chaudhuri, whose work is inspired by CTF’s Synodos model of collaboration. This innovative test could revolutionize how NF1 patients like Lashonda are monitored. It offers a simple and non-invasive way to predict tumor progression, empowering doctors to act before it’s too late.
“We believe the most effective way to bring treatments to NF patients more quickly is through collaboration and information sharing,” said Annette Bakker, PhD, CEO of the Children’s Tumor Foundation. “Patients shouldn’t have to ‘watch and wait’ to see if their tumors grow. This biomarker study can potentially flip that scenario and offer real hope for earlier detection.”
For Lashonda, whose MPNST required a difficult surgery followed by months of grueling recovery, the stakes couldn’t be higher. “It’s scary enough living with NF, but the cancer part—it’s a whole new level of fear,” she says. “If this test can catch it earlier, maybe someone else won’t have to go through what I did—or what my mom did.”
This study builds on the success of CTF’s collaborative model, which helped deliver the first FDA-approved NF treatment, Koselugo, for inoperable plexiform neurofibromas. Through powerful public-private partnerships with federal agencies like the Department of Defense’s CDMRP program and the NIH, alongside private organizations such as CTF, NTAP, and the Gilbert Family Foundation, the NF community ensures that great science doesn’t stop for lack of funding.
The research team behind the biomarker study is determined to make this test a routine part of NF1 care. They envision a future where patients and families can proactively address cancer risks, transforming lives in the process.
Lashonda dreams of that future, not just for herself, but for the next generation of NF patients. “My mom didn’t get the chance to benefit from something like this. But maybe now, families like mine will have more hope—and more time.”
Join the Fight
With your help, the Children’s Tumor Foundation can continue funding vital research like this, giving NF patients a chance at earlier detection and better outcomes. Together, we can ensure that Lashonda’s story becomes one of hope and progress.
Please give today at ctf.org/donate. Let’s change the future of NF care—together.
