Overview

Overview

Cleveland Clinic's Neurofibromatosis Program provides expert evaluation, management and treatment of neurofibromatosis (NF) disorders, including:

NF disorders affect individuals differently and are chronic conditions that require long-term management and follow-up care. Our patient-focused clinic is uniquely equipped to offer specialized, coordinated care to each individual and ensure continuity of care as they progress into adulthood. 

Our team approach provides access to a broad range of specialists in one central location with access to cutting-edge technology, latest imaging tools and therapies, including multi-modality treatments and MEK inhibitors.

Since 2006, our clinic has been a designated affiliate of the Neurofibromatosis Clinic Network (NFCN), established by the Children’s Tumor Foundation.

What We Treat

What We Treat

Cleveland Clinic's Neurofibromatosis Program treats many NF-related conditions and indications, including:

  • Schwannomatosis manifestations
    • Schwannomas
    • Hybrid nerve sheath tumor
    • Headache
Our Team

Our Team

NF Consulting Team

The core members of the team include pediatric and adult neurology, medical genetics, and ophthalmology. Other specialists may include oncology, orthopedic surgery, neurosurgery, plastic surgery, dermatology, cardiology, ENT, psychology and radiology.

Clinic Director


Gary Hsich, MD

Neurofibromatosis Clinic Program Coordinator

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Colleen Forster, RN, BSN

Pediatric Neurology


Gary Hsich, MD
Ashley Giel, CNP		  

Adult Neurology


Mina Lobbous, MD, MSPH

Medical Genetics

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Allison Schreiber MS, CGC

Ophthalmology


Elias Traboulsi, MD
Arun Singh, MD		  

Brain Tumor and Neuro-Oncology


Mina Lobbous, MD, MPSH
Pranay Soni, MD		  

Pediatric Oncology


Peter Anderson, MD
Neha Patel, MD		  

Orthopedic Surgery


David Gurd, MD

Pediatric Neurosurgery


Violette Recinos, MD

Adult Neurosurgery


Megan Jack, MD

Plastic Surgery


Francis Papay, MD

Dermatology


Joan Tamburro, DO

Pediatric Cardiology


Francine Erenberg, MD

Neuropsychology


Patricia Klaas, PhD

Pediatric Psychology


Kate Eshleman, PsyD
Michael Manos, PhD		  
Patient Resources & Support

Patient Resources & Support

Neurofibromatosis Patient Resources

Cleveland Clinic NF Family Day

Cleveland Clinic and Children’s Tumor Foundation co-sponsor NF Family Day, an annual event for patients, families, and medical professionals interested in neurofibromatosis. Since 2006, this free event offers a full day of informative sessions and provides attendees the unique opportunity to learn about a wide range of topics pertaining to neurofibromatosis from local and national thought-leaders in the field. Past keynote speakers include renowned specialists Vincent Riccardi, MD; David Viskochil, MD; Scott Plotkin, MD; and Ludwine Messiaen, PhD.

To learn more about Family Day, call 216.444.3135 and select option 0.

Art & Music Therapy

Art therapy is engaging in the creation of art, with the help of an art therapist, to assist with both emotional and physical healing and growth. Anyone can benefit from art therapy; it does not depend on talent or technical ability. The art therapist will discuss your interests and goals for the session and suggest art activities, which may include painting, sculpting, drawing, collage or craftwork.

Music therapy, under the supervision of a board-certified music therapist, combines music and therapeutic techniques and aids in the physiological, psychological and emotional well-being of the individual during treatment of an illness.

Caring Canine Program

Cleveland Clinic’s Caring Canine teams are certified therapy dogs and volunteer handlers who provide emotional support, increase smiles and laughter, and generally reduce anxiety for patients and their families. Dog handlers and their pets deliver world-class service by visiting patients, families and visitors during their time at Cleveland Clinic Children’s.

Child Life

Child life specialists are health professionals who assist children and adolescents and their families as they prepare for and cope with pediatric medical and emotional experiences such as surgery, hospitalization, tests, and procedures. We’ve discovered that when children understand what is happening to them, they cope more effectively and experience less trauma and anxiety. The Department of Pediatric Hematology, Oncology, and Blood & Marrow Transplantation has a dedication child life specialist available to our patients during their time with us.

Palliative Care

Our mission for Pediatric Palliative Care at Cleveland Clinic Children’s is to provide compassionate family-centered care to children of all ages facing complex, chronic conditions, while supporting and educating caregivers. The team will advocate to promote quality of life, enhance comfort, alleviate suffering and foster coordination of care. Patients in the Department of Pediatric Hematology, Oncology, and Blood & Marrow Transplantation have access to a dedicate nurse care coordinator from palliative care.

Social Work

Our social workers at Cleveland Clinic Children’s are licensed professionals skilled in addressing the counseling, support, and advocacy needs of patients and their families. Patients in our department have access to two dedicated social workers in our outpatient clinic, as well as a social work team during their inpatient stays. If you would like to meet with one of our social workers, please call 216.444.5517 to make an appointment.

Spiritual Care

The Center for Spiritual Care provides religious and spiritual needs for our patients, their families, and loved ones. Our clinically trained chaplains are committed to providing compassionate and appropriate spiritual care that respects the beliefs of each person.

More Information on Neurofibromatosis

Research

Research

Clinical Trials

Cleveland Clinic is a nationally and internationally renowned center for research and education. Patients in the NF program would have access to clinical trials through our Children’s Hospital, Neurological Institute, and Taussig Cancer Center. We encourage trial enrollment and refer patients to other centers for trials when appropriate. Through all of this, we work to maintain collaborative care between our caregivers, research teams, and other institutions.

Research

Specialists in the Center for Pediatric Neurosciences are involved in a number of research studies that help to advance the understanding of neurofibromatosis.

More Information on Neurofibromatosis

Appointments

Appointments

Pediatric Neurology Appointments

To schedule an appointment with a pediatric neurology specialist, please call 216.442.5069.

Members of our pediatric neurology team can be seen in the S Building (6th floor) on Cleveland Clinic’s main campus.

Pediatric Oncology Appointments

To schedule an appointment with a pediatric oncology specialist, please call 216.444.5517.

Members of our pediatric oncology team can be seen in the R Building on Cleveland Clinic’s main campus.

To contact the team via email, please send your message to pedsneuroonc@ccf.org.

Note: All patients looking to schedule an appointment must have a Cleveland Clinic Medical Record Number (MRN). If you do not have a Cleveland Clinic MRN, please call the appropriate number below and they will be able to assist you in getting your record created.

  • USA: 216.444.5437
  • International (including Canada): 216.444.6404

The above should be sent to:
Cleveland Clinic Children’s
9500 Euclid Avenue, S20
Cleveland, OH 44195 
Attn: Jennifer Weaver, RN

If you have questions about this process, please contact the brain and CNS tumor team at 216.444.1216 or pedsneuroonc@ccf.org.

For Medical Professionals

For Medical Professionals

Refer a Patient

Our Pediatric Neurology & Neurosurgery teams offer direct referral lines to ease the process of making a patient referral.

To refer a patient to the Neurological Institute via phone, please call our dedicated physician referral hotline at 216.445.8455. An intake coordinator will handle your call directly. If you are unable to reach an intake coordinator, please leave a message and they will return your call within the work day (if left before 1 p.m. ET) or the next work day (if left after 1 p.m. ET).

To refer a patient to the Neurological Institute via fax, please download and complete our physician referral form and fax to 216.636.2596.

eNewsletter

Pediatric Neurosciences Brief, published by Cleveland Clinic’s Neurological Institute, provides updates on research, innovations and education for use in your own cutting-edge practice for care of children with neurological disorders.

DrConnect

Stay connected to patients you refer to Cleveland Clinic through online updates and electronic medical records.

Publications

  • Koczkowska M, Chen Y, Callens T, … Zurcher V, et al. Genotype-Phenotype Correlation in NF1: Evidence for a More Severe Phenotype Associated with Missense Mutations Affecting NF1 Codons . Am J Hum Genet 2018; 844-848.102:69-87.
  • Pinheiro FS, Rothner AD, Moodley M, Zahka KG. Massive Soft Tissue Neurofibroma (Elephantiasis Neuromatosa): Case Report and Review of Literature. J Child Neurol 2015;30:1537-1543.
  • Ghosh PS, Rothner AD, Emch TM, Friedman NR, Moodley M. Cerebral vasculopathy in children with neurofibromatosis type 1. J Child Neurol 2013;28:95-101.
  • Sachdeva R, Rothner DA, Traboulsi EI, Hayden BC, Rychwalski PY. Astrocytic hamartoma of the optic disc and multiple café-au-lait macules in a child with neurofibromatosis type 2. Ophthalmic Genet 2010;31:209-214.
  • Friedman N. Pediatric stroke: past, present, and future. Adv Pediatrc 2009;56:271-299.
  • Kotagal P, Rothner AD. Epilepsy in the setting of neurocutaneous syndromes. Epilepsia 1993;34:S71-S78.
  • Egelhoff JC, Bates DJ, Ross JS, Rothner AD, Cohen BH. Spinal MR findings in neurofibromatosis types 1 and 2. Am J Neuroradiol 1992;4:1071-1077.
  • Kay LD, Rothner AD, Beauchamp GR, Myers SM, Estes ML. Ocular Findings Associated with Neurofibromatosis Type II. Ophthalmology 1992;99:1424-1429.
  • Cohen BH, Rothner, AD. Incidence, types, and management of cancer in patients with neurofibromatosis. Oncology (Williston Park) 1989;9:23-30.