Find a Schwannomatosis Clinic

Rebecca Brown, MD, PhD

NF Program Director; Neuro-Oncologist (joined from Mt. Sinai November 2024) — NF1, NF2-SWN, and schwannomatosis subtypes

• NF1 and NF2-SWN clinical care and clinical trials
• Brings neuro-oncology and NF clinical trial expertise from Mt. Sinai NF program

Bruce Korf, MD, PhD

Founding Director; Chief Genomics Officer

• Co-author, 2021 International NF1 Diagnostic Criteria
• 200+ publications in neurofibromatosis
• Former Director, NF Clinical Trials Consortium
• UAB Medical Genomics Laboratory — co-architect of the NF testing infrastructure used nationwide

Erika Walsh, MD

Neurotologist / ENT — NF1, NF2-SWN, and SWN hearing; lateral skull base surgery

Vanessa Eulo, MD

Medical Oncologist — NF1 MPNST, plexiform neurofibroma, selumetinib

Girish Dhall, MD

Pediatric Neuro-Oncology — active in multi-center NF and SWN clinical trials

Radhika Dhamija, MBBS

Neurologist / Clinical Geneticist; Department of Clinical Genomics and Neurology — dual MN/AZ appointment; NF Clinic Co-Director

• Co-author, GeneReviews Dec 2025 — NF2-Related Schwannomatosis (current standard clinical reference)
• Dhamija et al. 2021: LZTR1-related spinal schwannomatosis and 7q11.23 duplication syndrome (PMC7963420)
• Co-author: Mayo Clinic bevacizumab in NF2-SWN vestibular schwannoma series (PMC10489321, 2023)

Mayowa A. Osundiji, MBBS, PhD

Clinical Genomics — NF1, NF2-SWN, schwannomatosis; Phoenix campus (5881 E. Mayo Blvd.)

Neil R. Friedman, MBChB

Director, Barrow Neurological Institute at Phoenix Children's; Diane and Bruce Halle Endowed Chair in Pediatric Neurosciences

Ross Mangum, MD

Clinic Co-Director; Pediatric Hematology-Oncology

Karishma Parikh, MD

Pediatric Neuro-Oncologist — neurocutaneous disorders

Tena Rosser, MD

Director, Comprehensive NF Clinic; Associate Professor of Clinical Pediatrics and Neurology — NF1 and Schwannomatosis

• Site Principal Investigator for NF1 AND Schwannomatosis multi-center trials
• Long-standing NF Clinical Care Advisory Board member
• CTF Humanitarian Award 2015

Linda Randolph, MD, FAAP, FACMG

Co-Director, Comprehensive NF Clinic; Division of Medical Genetics

Cynthia Campen, MD

Co-Director, NF Center; Clinical Professor, Neurology / Neuro-Oncology

• Active in multi-center NF and SWN clinical trials
• Clinical trials for pediatric brain tumors and NF-associated tumors
• Neuroimaging biomarkers in NF1

David A. Stevenson, MD

Co-Director, NF Center; Clinical Genetics / Pediatrics

Phioanh (Leia) Nghiemphu, MD

Clinic Director; Neuro-Oncologist — NF1, NF2-SWN, and schwannomatosis

• Co-author: Imaging as early biomarker to predict everolimus sensitivity for progressive NF2-related vestibular schwannoma (J Neuro-Oncology, 2024)
• Active in NF2-SWN clinical trials

Marco Giovannini, MD, PhD

Scientific Director, NF Program; Director, Neural Tumor Research Laboratory — NF2/SWN molecular biology

• Seminal research on NF2 tumor suppressor (merlin) and SMARCB1 gene function in schwannomatosis
• PI, Phase II everolimus (RAD001) trial for NF2-related vestibular schwannoma — mTORC1 inhibition (NCT01345136; NCT01490476)
• 4-year Phase II study of everolimus in NF2 patients with growing vestibular schwannomas (J Neuro-Oncology, 2017)
• Friedrich von Recklinghausen Award, CTF, 2021

Richard Everson, MD

Neurosurgeon — NF2-SWN brain and spine surgery

Marvin Bergsneider, MD

Neurosurgeon — skull base and NF2-SWN surgery

Vivian Y. Chang, MD

Clinical Geneticist — NF genetics and diagnosis

Julian A. Martinez, MD, PhD

Clinical Geneticist

Brian Na, MD, PhD

Co-Director, Comprehensive NF Center; Pediatric and Adult Neuro-Oncologist

• AYA/adult SWN clinic — 100 patients in first 9 months of operation
• Active in multi-center NF and SWN clinical trials
• Translational research: advancing SWN lab discoveries into clinical trials

Alyssa Reddy, MD

Director, Pediatric NF Clinic; Pediatric Neurologist

• 20+ years of experience in pediatric brain tumors and neurofibromatosis
• Published in Nature Communications 2024: NF tumor suppressor interactions in Schwann cell tumor de-differentiation
• Co-author, multicenter maintenance bevacizumab trial for NF2-SWN progressive vestibular schwannomas (Neuro-Oncology 2023)

Sepideh Mokhtari, MD

Director, Genetic Neuro-Oncology Clinic — NF1, NF2-SWN, and schwannomatosis (non-NF2-SWN)

• Clinical specialties: NF1, NF2-SWN, schwannomatosis (non-NF2-SWN) — separately designated
• Neuro-Oncology Fellowship, Memorial Sloan Kettering Cancer Center
• Research: neurologic complications of immunotherapy; paraneoplastic syndromes

Nam Tran, MD

Co-Director, NF Clinic; Neurosurgery — skull base and NF-associated tumor surgery

Hans H. Shuhaiber, MD

Director, NF Center; Neurologist and Neuro-Oncologist

• Active: REC-2282 — NF2-SWN meningioma trial
• Active: ReNeu mirdametinib — NF1 plexiform neurofibroma trial

Roger Stupp, MD

Co-Director; Neuro-Oncology — Lou and Jean Malnati Brain Tumor Institute

James P. Chandler, MD

Co-Director; Neurosurgery

James H. Tonsgard, MD

Director, Ambulatory NF Program; Pediatric Neurology — NF1, NF2, and schwannomatosis (45+ years)

• Active in multi-center NF clinical trials
• 45+ years directing one of the country's longest-running NF programs

Sudarshawn Damodharan, DO

Co-Director (incoming); Pediatric Neuro-Oncology — taking over program leadership from Dr. Tonsgard (transition in progress, call to confirm)

Stefania Maraka, MD

Director, Adult NF Clinic; Assistant Professor, Department of Neurology and Rehabilitation; Director, Adult Neurofibromatosis Clinic at the UI Brain Tumor Center

• Santiago-Cruz, Dixit, Maraka et al. 2024: "Updates on Revised Diagnostic Criteria and Targeted Therapies for Neurofibromatosis" — covers NF1, NF2-SWN, and non-NF2-SWN (Advances in Oncology)
• Research focus: CNS clinical trial design and neurofibromatosis

Nikolas Mata-Machado, MD, MHA

NF Clinic Co-Director (Pediatric); Associate Professor of Pediatrics and Neurology

Steven Rhodes, MD, PhD

Director, NF Multidisciplinary Program; Pediatric Hematology-Oncology; active in multi-center NF clinical trials

• Active in multi-center NF and SWN clinical trials

Laurence Walsh, MD

Co-Director; Child Neurology

Kathryn Nevel, MD

Adult NF and Schwannomatosis — Neuro-Oncology

Jamal Mohamud, DO

Adult NF — Neurology

Scott R. Plotkin, MD, PhD

NF Program Director; Associate Professor of Neurology, Harvard Medical School

• Principal Investigator, STARFISH trial — erenumab for SWN pain (NCT05684692); open to all subtypes including SWN-NEC; actively recruiting
• Principal Investigator, INTUITT-NF2 — multi-arm basket trial for NF2-SWN (NCT04374305)
• Lead author, 2022 International Consensus Classification of Schwannomatosis (Genet Med.)
• Co-founder, REiNS International Collaboration — the body that sets outcome measures for all NF/SWN clinical trials
• Phase II bevacizumab trial for NF2-SWN vestibular schwannoma — 57% hearing improvement demonstrated
• Friedrich von Recklinghausen Award, 2019
• Former Chair, NF Clinical Care Advisory Board (CCAB)

Fawn Leigh, MD

Neurologist, NF Program — NF1, NF2-SWN, and all schwannomatosis subtypes (adults and children)

Jaishri O. Blakeley, MD

Marjorie Bloomberg Tiven Professor; Director, JHCNC; Director, NTAP

• Director, NTAP — 80+ research labs funded worldwide; the largest NF drug development initiative globally
• Co-author, 2022 International Consensus Classification of Schwannomatosis
• Francis S. Collins Scholars Program — trains the next generation of NF clinician-scientists
• NF Clinical Care Advisory Board member
• Multiple active NF1, NF2-SWN, and schwannomatosis clinical trials — drug development and pain

Allan Belzberg, MD

Director, Peripheral Nerve Surgery — peripheral nerve tumor surgery, schwannoma resection, NF1 MPNST

• Among the most experienced peripheral nerve surgeons in the country for nerve-associated tumors
• Peripheral nerve tumor surgical outcomes and nerve preservation

Carlos Romo, MD

Neuro-Oncologist; NTAP Director of Clinical Research — NF trial PI, NF1 and NF2-SWN

• NTAP Director of Clinical Research — translates bench discoveries to clinical protocols
• Multiple NF1 and NF2-SWN trial PI roles

Kimberly Ostrow, MA, PhD

Assistant Professor, Department of Neurology — Research Scientist, SWN Genetics, Epigenetics, and Pain Biology

• Co-Director, International Schwannomatosis Database (funded by CTF)
• Studies pain mechanisms in SWN — tumor secretome, cytokine signaling, sensory neuron sensitization
• Created immortalized human Schwann cell lines from SWN tumors for research
• European NF Public Award — greatest potential for clinical impact in NF

Wendy R. Uhlmann, MS, LCGC

Medical Genetics Clinic — NF1 and Schwannomatosis

B. Gregory Thompson, MD

Neurosurgery — NF1, NF2-SWN

Dusica Babovic-Vuksanovic, MD

Director, NF Program; Medical Genetics — long-tenured NF clinical leader

• NF1 and NF2-SWN clinical genetics and long-term management
• Medical genetics of neurocutaneous disorders

Radhika Dhamija, MD

Co-Director; Medical Genetics / Neurology — dual appointment MN/AZ campuses

• Co-author, GeneReviews Dec 2025 — NF2-Related Schwannomatosis (the current standard clinical reference)
• NF2-SWN genetics, natural history, and clinical management

Jaclyn Peraino, DO

Clinic Director; Neurology

Dihong Zhou, MD

Clinic Co-Director; Neurology

Matthias A. Karajannis, MD, MS

Chief, Pediatric Neuro-Oncology Service; Director, Pediatric Neuro-Oncology Fellowship

• Active in multi-center NF and SWN clinical trials
• Crizotinib Phase II trial for NF2-SWN progressive vestibular schwannoma
• Neurofibromatosis, peripheral nerve sheath tumors, and pediatric brain tumor research

Anna Piotrowski, MD

Adult Neuro-Oncology — NF1, NF2-SWN, and schwannomatosis

Kaleb Yohay, MD

Director, Comprehensive Neurofibromatosis Center — NF1, NF2-SWN, and schwannomatosis

• Co-author, first clinical practice guidelines for adults with NF1
• Trial PI: Crizotinib for NF2-SWN progressive vestibular schwannomas
• Trial PI: MEK inhibitor PD-0325901 for NF1-associated plexiform neurofibromas
• Trial PI: Poly-ICLC for progressive low-grade gliomas in NF1

Sean McMenomey, MD

Neurotology / Otolaryngology — NF2-SWN vestibular schwannoma; skull base surgery; hearing rehabilitation

• High-volume skull base surgery specializing in NF2-SWN vestibular schwannoma
• Cochlear implantation outcomes for NF2-SWN hearing loss rehabilitation

Devorah Segal, MD, PhD

Co-Director; Pediatric Neurology / Neuro-Oncology

Allan Rubenstein, MD

Neurologist — decades of NF clinical experience

Elizabeth Schorry, MD

Program Lead; Clinical Genetics — one of the longest-running NF genetics programs in the US

Peter de Blank, MD, MSCE

Pediatric Neuro-Oncologist; active in multi-center NF and SWN clinical trials

• Active in multi-center NF and SWN clinical trials
• Pediatric neuro-oncology; NF-associated brain tumors

Robert Hopkin, MD

Clinical Geneticist

Darcy Krueger, MD, PhD

Child Neurology — tuberous sclerosis and NF specialist

Murugu Manickam, MD, MPH, FACMG

Clinic Director; Medical Genetics

Maryam Fouladi, MD

Neuro-Oncology Program Director

Jeffrey R. Leonard, MD

Neuro-Oncology Program Director

Alex Mohler, MD

Director, Vanderbilt NF Program

Paul Moots, MD

Co-Director; Neuro-Oncology

John Slopis, MD

Director, MD Anderson NF Program; Associate Professor, Department of Neuro-Oncology

• Clinical specialties: NF1, NF2-SWN, and schwannomatosis (non-NF2-SWN) — separately designated
• Published research on chronic pain in NF1, NF2, and schwannomatosis
• NF2 clinical trials — molecularly targeted therapies for progressive NF2-SWN tumors
• NF2-SWN pediatric vestibular schwannoma clinical series (Neuro-Oncology 2024)

Gregory Friedman, MD

Co-Director; Neuro-Oncology — malignant NF, MPNST, and advanced NF tumor management

Justin Jordan, MD, MPH

Neuro-Oncologist; SWN Specialist — all schwannomatosis subtypes including SWN-NEC

• Co-author, Merker et al. 2022 — the schwannomatosis diagnostic delay study (Am J Med Genet A.)
• SWN clinical outcomes, multi-subtype diagnosis, SWN-NEC diagnostic criteria
• Moved from MGH / Harvard to UT Southwestern in 2025

Laura Klesse, MD, PhD

NF Program Director (pediatric); Co-Chair, NF Clinical Care Advisory Board (CCAB) since 2023

• CCAB Co-Chair — shapes NF care standards across all designated centers nationally
• NF1 clinical research, pediatric NF1 genetics and oncology

Lu Le, MD, PhD

Professor of Dermatology; Director, Adult NF Program — NF1-MPNST, cutaneous neurofibroma biology

• NF1-MPNST preclinical models and translational research

David H. Viskochil, MD, PhD

Clinic Director; Professor of Pediatrics — nationally recognized NF1 specialist

Vanina Taliercio, MD

Clinic Co-Director

Donald Basel, MD, MBBCh, BSc

Clinic Director; Pediatric Genetics / Genomics; affiliated with Medical College of Wisconsin

Leah Lalor, MD

Clinic Co-Director

Neha Patel, MD

Clinic Director; Pediatric Neuro-Oncology