In the world of NF research and care, dedicated scientists and clinicians have long relied on a patchwork of support to push the boundaries of discovery and treatment. Now, with the unexpected loss of Department of Defense (DOD) funding for NF research in 2025, the role of the Children’s Tumor Foundation (CTF) has never been more critical—or more urgent. Now is the time to Take Action.
Marco Giovannini, MD, PhD
Two leaders at the forefront of this mission are Dr. Marco Giovannini and Dr. Leia Nghiemphu, who are the co-founders of the UCLA Comprehensive Neurofibromatosis and Schwannomatosis Program (UCNSP). Dr. Giovannini is a Professor in the Department of Head & Neck Surgery and the Scientific Director of UCNSP, while Dr. Nghiemphu is an Associate Professor of Clinical Neurology and the Director of Clinical Service of the UCLA Neuro-Oncology Program, as well as the Director of the UCLA NF and Schwannomatosis Clinic. Their collaborative efforts in research and patient care at UCLA are helping to shape the future of NF/SWN treatment and discovery.
Drs. Giovannini and Nghiemphu will be speaking about this topic at the Children’s Tumor Foundation’s 2025 NF Summit: Fueling Momentum: Your Role in Advancing NF Research Now – Friday, June 20th at 1:30pm
The Immediate Impact
“We are devastated because of the news of the lack of DOD funding for 2025,” said Dr. Giovannini. “Just that one-year gap can be detrimental because we are in such a tense moment, financially, in maintaining our labs. The biggest risk is that scientists frustrated and worrying about the future of their labs will eventually jump off the NF ship and go to other fields.”
Dr. Nghiemphu, who directs the NF and Schwannomatosis Clinic at UCLA Health—one of the few clinics in the country dedicated to adult NF patients—shared similar concerns. “With the DOD program not funded this year, we worry that the gap could slow the growing momentum of pharma interest in NF, especially for a rare disease with fewer patients than more traditional areas,” she explained. “But in the meantime, we still have to care for these patients. They’re real patients with real morbidity and dysfunctions, with problems in their quality of life because of the disease.”
CTF’s Role: A Lifeline for the NF Community
Leia Nghiemphu, MD
Amid this uncertainty, CTF’s leadership and support have become even more vital. “CTF helped me establish this clinic and learn how to transition patients from pediatric care to adult care,” said Dr. Nghiemphu. “They helped with fundraising for the clinic, provided a clinic coordinator and nurse coordinator, and set up a mentor-mentee program with other providers. Honestly, I seldom see an organization that works on all aspects of clinical care for patients this way—connecting providers across the country to share ideas and best practices.”
Dr. Giovannini echoed this, reflecting on how CTF has shaped his own career and the future of NF research. “CTF is doing more than fantastic work,” he said. “I have no words to express how important the CTF is and has been, and how it has evolved in these last few years.”
A Future Fueled by CTF’s Leadership—and Donor Support
Despite these daunting challenges, there is hope—because organizations like CTF continue to champion the NF community. “At least we still have the Children’s Tumor Foundation,” said Dr. Nghiemphu. “Knowing that CTF is working to find solutions and support the research infrastructure gives us reason to stay hopeful and keep pushing forward.”
This sentiment is shared by researchers and clinicians across the NF community, who see CTF not just as a partner, but as a lifeline. “The way science works right now, funding is the number one concern,” Dr. Giovannini stressed. “We need this constant flow of new blood, of bright minds, to maintain and expand the field. And that’s my concern—losing scientists and potential new investigators who might otherwise see a clear career path in NF.”
Working Together to Fuel Progress
Drs. Giovannini and Nghiemphu’s collaboration at UCLA exemplifies what’s possible when research and clinical care are aligned—and when they have the support they need to keep moving forward. At the UCLA NF Clinic, they are not only advancing promising science, but also directly caring for patients who rely on these breakthroughs.
Join Us in Filling the Gap
As the Children’s Tumor Foundation rallies to fill the gap left by these funding cuts, we invite you to stand with us. Your support ensures that scientists like Dr. Giovannini can keep their labs open and that clinicians like Dr. Nghiemphu can continue to provide expert care for patients who need it most. Your gift fuels not just the research, but the care, solutions, and treatment options that families need and patients depend on.
The science—and the lives of patients—can’t afford to wait. With your help, we can keep moving forward.
👉 Join us in this urgent mission. Donate today to support life-changing NF research and care.
