Skip to main content Skip to navigation
We care about your privacy. Read about your rights and how we protect your data. Get Details

The Gilbert Family Neurofibromatosis Institute

Contact number | 202-476-5181
Neurologist and Patient During Exam.

All of the Experts You Need in One Place

Treating neurofibromatosis is a team effort, and our providers are experts in their fields.

Meet the team

The goal of the Gilbert Family Neurofibromatosis Institute at Children’s National Hospital is to help children with neurofibromatosis type 1 or 2 (NF1, NF2) live more normal lives. It is one of the world’s largest programs, and the longest standing program in the United States, changing the lives of children and families since 1982. This experience ensures that your child will have access to unparalleled expertise and care.         

Helping Children With Neurofibromatosis

Our dedication to your child’s health and well-being is why we’ve brought together some of the best and brightest minds on our medical and research teams. 

Highlights of our program include:

  • Expertise. Our clinical/translational team is led by Roger J. Packer, M.D., an internationally-recognized pediatric neurologist who brings his unique depth of experience in innovative clinical research, diagnosis and treatment and Miriam Bornhorst, M.D., a pediatric neuro-oncologist dedicated to the field of NF.
  • Team approach. From neurologists to eye experts (neuro-ophthalmologists) to geneticists to oncologists, our world-class sub-specialist team is experienced in meeting the complete, unique needs of each neurofibromatosis patient.
  • Seamless care. We offer several multidisciplinary clinics, giving your child access to a broad range of specialists in one central location. Learn more about our related departments.
  • Support. Having a child with neurofibromatosis can affect your entire family, and we are here to help. We offer services to meet your family’s emotional, spiritual and mental health needs. We were also one of the first programs in the world to offer a summer camp just for children with neurofibromatosis. Camp New Friends is the largest neurofibromatosis summer camp on the East Coast.

World-Class Neurofibromatosis Care at Children’s National

We offer highly specialized treatments for your child, some of which are only available at Children’s National. In fact, we have successfully treated conditions and complications that were previously thought to be untreatable.

Using a personalized approach, we coordinate treatments, therapies and support to relieve symptoms while protecting your child from long-term complications.

Highlights of the world-class neurofibromatosis care and programs at Children’s National include:

  • Neurologic, neuro-oncologic and oncology care. Our clinical team led by Drs. Bornhorst, Packer and Aerang Kim, M.D., (pediatric oncologist, Malignant Peripheral Nervous System Tumor Program director) provides unparalleled care and develops and leads national and international studies providing innovative, life-changing care.
  • Life-changing therapeutic studies. The Gilbert Family Neurofibromatosis Program, a founding member of the Department of Defense Neurofibromatosis Clinical Trials Consortium and other national consortium (Sarcoma Alliance, Pediatric Brain Tumor Consortium) offers therapeutic options available in few programs around the world.
Other expertise of the program includes:
  • Ophthalmologic expertise. Steven Stasheff, M.D., within our Division of Neuro-Ophthalmology, specializes in caring for complications affecting your child’s vision with a special emphasis on neurologic complications and visual pathway gliomas. We offer treatments that can improve or save your child’s eyesight.
  • Cognitive rehabilitation. Kristina Hardy, Ph.D., and Karin Walsh, Psy.D., lead pioneering efforts to improve working memory and brain functioning through cognitive rehabilitation. This therapy uses computer exercises to strengthen specific brain activities.
  • Genetic expertise and care. Led by Kenneth Rosembaum, M.D. (pediatric geneticist) and Dr. Bornhorst (Oncologic Neurogenetics leader) the program has a long tradition of integration of genetics and genetic counseling into NF1 and NF2 care.
  • Laboratory/translational research. In addition to our unmatched clinical trials experience, which gives your child access to new medications, including targeted therapies, and soon immunologic therapies, our laboratory-based research program under the direction of Yuan Zhu, Ph.D., (scientific director of the Gilbert Family Neurofibromatosis Institute) and now with the addition of Javad Nazarian, Ph.D., M.Sc., the program is performing laboratory research which focuses on NF1-related low-grade glioma, transformed gliomas, plexiform neurofibromas and malignant peripheral nerve sheath tumors to develop new therapeutic approaches for these NF1 complications. Ours is one of the largest NF1-dedicated research programs in the world and provides its clinicians new avenues to explore to improve outcomes.
  • Family of other specialists. Given the complexity of the needs of children and families with NF1 and NF2, in addition to the daily involvement of neurology, genetics, oncology, neuro-ophthalmology and neuropsychology, there is active involvement in the multidisciplinary clinic by developmental pediatrics (Dr. Uy), orthopedics (Dr. Oetgen), Physical Medicine and Rehabilitation (Dr. Shin), psychiatry, psychology, ENT, endocrinology, plastic surgery, neurosurgery and hearing and speech.
  • Adult care. Physicians board-certified in both pediatric and adult neurology ensure a smooth transition to adult care. If your child’s case is complex, he or she can stay at Children’s National. We are one of few pediatric programs in the country capable of caring for adults.

Conditions We Treat

Our team treats conditions related to neurofibromatosis, including:

  • Optic nerve gliomas and other low-grade gliomas
  • Transformed anaplastic gliomas
  • Plexiform neurofibromas
  • Malignant peripheral nerve sheath tumors
  • Learning disabilities and behavioral challenges
  • Autism spectrum disorders associated with NF1
  • Acoustic schwannomas and associated hearing/language deficits
  • Other pediatric neurofibromatosis-related tumors
  • Orthopedic complications including scoliosis and tibial dysplasia
  • Meningiomas
  • NF1-related hormonal dysfunction
  • Intraspinal ependymomas

International Leaders in Neurofibromatosis Research

Our experts share a commitment to developing safer, more effective therapies that help reverse the course of neurofibromatosis, including NF1 and NF2. Through clinical trials, your child has access to new treatments that are only available in select programs worldwide. 

Another aspect of our NF1 and NF2 program which distinguishes Children’s National is our leadership in some of the world’s most prestigious neurofibromatosis research networks.

Notable accomplishments include:

Contact Us

For more information or to make an appointment, call us at 202-476-5181.

Ida's Story


ida teaser image

Ida Namazi is a bright, ambitious 21-year-old University of Virginia junior who dreams of attending law school and becoming a senator one day. What people might not know about Ida is that she was diagnosed with neurofibromatosis type 1 (NF1) when she was a toddler and has been battling the neurologic condition her whole life.

Ida's Story

Neurofibromatosis Institute Team

  • Roger Packer

    Roger Packer
    Director, Gilbert Neurofibromatosis Institute
    Director, Brain Tumor Institute

  • Miriam Bornhorst

    Miriam Bornhorst
    Clinical Director, Gilbert Neurofibromatosis Institute

  • Kenneth Rosenbaun

    Kenneth Rosenbaum
    Medical Geneticist

  • AeRang Kim

    AeRang Kim

  • Ryan Uy

    Ryan Uy
    Developmental and Behavioral Pediatrician
    Medical Director, Fragile X Clinic

  • Priya Vaidyanathan

    Priya Vaidyanathan
    Director, Thyroid Nodule and Cancer Program
    Associate Director, Endocrinology Fellowship

  • Brian Rood

    Brian Rood
    Director, Clinical Neuro-Oncology
    Medical Director, Brain Tumor Institute

  • Dr. Eugene Hwang

    Eugene Hwang
    Division Chief, Oncology

  • Lindsay Kilburn

    Lindsay Kilburn

  • Steven Stasheff

    Steven Stasheff

  • Elizabeth Wells

    Elizabeth Wells
    Senior Vice President, Center for Neuroscience and Behavioral Medicine

  • Gerard Gioia

    Gerard Gioia
    Director, Safe Concussion Outcome, Recovery and Education (SCORE) Program

  • Karin Walsh

    Karin Walsh
    Assistant Director of Research and Scholarship, Neuropsychology

  • Gilbert Vezina

    Louis Vezina
    Director, Neuroradiology Program

  • Dr. Jonathan Murnick

    Jonathan Murnick

  • Robert Keating

    Robert Keating
    Division Chief, Neurosurgery

  • John Myseros, MD, Neurosurgeon

    John Myseros
    Vice Chief, Neurosurgery

  • Chima Oluigbo

    Chima Oluigbo
    Pediatric Neurosurgeon

  • Matthew Oetgen

    Matthew Oetgen
    Division Chief, Orthopaedic Surgery and Sports Medicine
    Spine, Hip and Orthopaedic Trauma Specialist

  • Gary Rogers

    Gary Rogers
    Division Chief, Plastic and Reconstructive Surgery

  • Mi Ran Shin

    Mi Ran Shin
    Associate Fellowship Program Director, Rehabilitation Medicine
    Associate Medical Director, Safe Kids DC
    Pediatric Rehabilitation Specialist

  • Dorothy Davis

    Dorothy Davis
    Nurse Practitioner

  • Children's National Hospital

    Jessica Green
    Nurse Practitioner

  • Peter Shibuya

    Peter Shibuya
    Nurse Practitioner, Stroke