Shaping the Future of NF2 Care
For patients with NF2-related schwannomatosis (NF2), access to expert care was once limited and often far from home. Today, that reality is changing — driven by a growing center of excellence at UT Southwestern. Patients in the Southern United States may now see a team at the forefront of the diagnosis and treatment of NF2, as well as groundbreaking research and the pursuit of a cure.
NF2 typically begins in the 20s and 30s and is characterized by tumors on both hearing nerves, leading to progressive deafness, balance issues, and other complex complications. Walter Kutz, M.D., Professor of Otolaryngology and Neurological Surgery; Justin Jordan, M.D., M.P.H., FAAN, Associate Professor of Neurology and Section Head of Neuro-Oncology, and Aaron Plitt, M.D., Assistant Professor of Neurological Surgery, are part of a thriving academic multidisciplinary program to advance NF2 care.
National Leaders in NF2
Dr. Kutz joined UT Southwestern in 2007 after a residency in otolaryngology and a two-year fellowship in the subspecialty of neurotology. His primary focus is vestibular schwannomas, also known as acoustic neuromas, and he trained at the renowned House Ear Clinic in Los Angeles, the busiest center for NF2 and the first center to perform an auditory brainstem implant, which allows patients to detect sound after acoustic neuroma removal. Unlike a cochlear implant, the auditory brainstem implant bypasses the damaged hearing nerve, often lost when these tumors are removed, and stimulates the cochlear nucleus in the brainstem.
During his residency at another large academic medical center, he encountered patients with NF2 but felt their care was fragmented and challenging in the absence of a multidisciplinary approach. The complexity of the condition and the need for coordinated expertise set the stage for his role at UT Southwestern.
Dr. Jordan trained as a neurologist at UT Southwestern and then completed a fellowship in neuro-oncology at Massachusetts General Hospital and the Dana-Farber Cancer Institute in Boston. He had a distinguished mentor in the NF2 field and was able to get a federally funded grant to conduct genetic research on NF2-associated tumors. He developed a deep interest in both the science of the disease and the patients it affects. Dr. Jordan was on the faculty 10 years at Harvard Medical School and Massachusetts General Hospital, where he was a leader in one of the largest NF2 clinics in the country; he relocated back to UT Southwestern in summer 2025.
“This is a huge moment for our program. The experience Dr. Jordan brings instantly elevates what we can offer, and I’ve had patients from Texas and surrounding states traveling all the way to Boston for care — which made sense, because that’s where the expertise was,” said Dr. Kutz. “But now, when I tell them they can receive that same level of specialized care right here in Texas, the reaction is incredible. They’re relieved, they’re excited, and so am I.”
With the addition of Dr. Plitt, UT Southwestern is changing the landscape of NF2 care by building a new level of expertise locally — not only in terms of access but also through his multidisciplinary approach. Dr. Plitt completed his residency in neurosurgery at UT Southwestern prior to completing a fellowship in skull base surgery at the Mayo Clinic. At the Mayo Clinic, he participated in the highly integrated, multidisciplinary care for patients with complex medical problems from all over the world. This experience informs how he approaches patient care, especially for people with NF2.
Streamlined Care
In many places, a patient with NF2 might see a neurosurgeon, a neurotologist, or an oncologist, with each specialist focusing on just their area of expertise. But NF2 affects every aspect of a patient’s life, and this siloed approach does not adequately support the overall health of those affected by the disease.
When care is fragmented across multiple doctors and specialties, and sometimes even different hospital systems, it quickly becomes disjointed. For patients and families, it’s not just medically complex — it’s physically exhausting and often financially and socially overwhelming.
“Here, everything is under one roof. We have neurosurgeons, neurotologists, neuro-oncologists, and plastic surgeons who specialize in facial reanimation, speech pathology, audiology, full rehabilitation services, cochlear implants, and ophthalmologists with a specific focus on NF2,” said Dr. Kutz. “When you bring that level of coordinated expertise together, you streamline care — and it’s simply better for patients.”
“Not every major academic center has the subspecialists that are required to take care of patients that have inherent neurologic illness like we do,” said Dr. Plitt. “Almost all these tumors are benign, and so, these patients go through a lot and require integration of care across multiple very subspecialized areas of medicine.”
UT Southwestern’s size and its commitment to research and complex patient care provides these patients with greater access. And due to this highly communicative, multidisciplinary team, it is one of only a few sites around the country in the Department of Defense-funded Neurofibromatosis Clinical Trials Consortium, which elevates the opportunity for patients to participate in trials and experience best-in-class care. There are over 100 patients in the UT Southwestern NF2 program, which is still open to enrollment, and the team sees patients from across Texas and the United States.
Complex Cases
"NF2 is an autosomal dominant disorder, meaning it can be passed directly from parent to child. Yet about half of patients are the first in their families to be diagnosed, becoming the founders of the disease,” said Dr. Jordan. “With the average age of diagnosis around 22, many patients have had their first child or are already planning a family, and it’s a pivotal moment in their lives to understand the genetic side of the disease and the potential of passing it on.”
The severity of the disease can be sudden and significantly complex for such a young person, but the team at UT Southwestern navigates these cases with powerful support and better clinical outcomes.
An 18-year-old with NF2 — whose mother also has the condition — had been on long-term medical therapy for growing vestibular schwannomas when he developed severe headaches from hydrocephalus, a dangerous buildup of spinal fluid. In a surgery that lasted many hours, a large multidisciplinary team removed the tumor causing the blockage and implanted an auditory brainstem device to give him a chance at hearing again. Within days, his headaches were largely resolved, normal spinal fluid flow was restored, and, after rehab, he was back home with an optimistic outlook.
Another young patient had bilateral vestibular schwannomas and became deaf, but her tumors weren't so large as to require removal. The team introduced the idea of placing a cochlear implant without removing the tumors, but the plan had one challenge. The nerve through which the implant signal would travel was surrounded by a tumor. Other places might have done nothing in this case, but the team performed the surgery and the patient’s communication abilities rebounded. She went from being unemployed to having meaningful employment, allowing her to support her family.
Novel Treatments
“We've had this auditory brainstem implant now for over 40 years, but the real game changer comes in the multiple medical treatments that can give patients another option besides surgery,” said Dr. Plitt.
Most notably, bevacizumab has been shown to shrink vestibular schwannomas in about 40% of patients and improve hearing in roughly the same percentage. Although tumor size doesn’t directly correlate with hearing, the drug often serves as a critical bridge, helping patients preserve native hearing and delay deafness. Another promising therapy is brigatinib, which has demonstrated the ability to shrink other NF2-related tumors, including meningiomas, the tumors most often associated with NF2-related mortality.
This is significant because many patients have tumors that aren’t safely removable, often due to prior surgeries that complicate healing. In a genetic disease like this — where the brain, spine, and peripheral nerves are all at risk — systemic therapies are especially promising, because they can reach tumors throughout the body. With the right approach, both the quality and length of life can be improved.
Looking Ahead
“We have known the genetic cause of NF2 a long time,” said Dr. Jordan. “The treatments and the specialists keep getting better, but the next step is to find something curative in the world of gene therapy.”
Dr. Jordan is working to streamline the diagnostic journey for patients, shortening the time to a definitive answer and earlier intervention. As gene-based diagnostics become more precise and gene-targeted therapies move closer to reality, the future of NF2 care will continue to improve. The promise of gene therapy is transformative, not just in treating tumors as they appear, but also in correcting or treating the underlying mutation itself, offering families clearer answers, earlier action, and the possibility of curing the disease.
Thanks to this multidisciplinary team and a continued commitment to research, Dr. Jordan is harnessing the program’s collective expertise and using his role on a national Clinical Care Advisory Board to shape and elevate the standard of care for NF2 patients and their families — today and in the future.