Overview

Overview

The Cleveland Clinic Neurofibromatosis Center is a patient focused clinic that provides expert evaluation, management and treatment of all forms of neurofibromatoses, including neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), mosaic or segmental neurofibromatosis, and schwannomatosis, across the lifespan. Since 2006, the clinic has been a designated affiliate of the The Neurofibromatosis Clinic Network (NFCN), established by the Children’s Tumor Foundation.

NF-related disorders are chronic disorders that require long-term management and follow-up care. At the Cleveland Clinic, we are uniquely able to provide continuity of care as individuals progress into adulthood. Neurofibromatosis affects individuals differently and may involve many organ systems and additional conditions.

Neurofibromatosis Program | Cleveland Clinic Children's

We provide individualized, specialized and coordinated care for this complex condition with the focus on you. 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 multi-modality treatments should they be necessary.

Neurofibromatosis Program | Cleveland Clinic Children's
What We Treat

What We Treat

The Cleveland Clinic Neurofibromatosis Center treats many conditions resulting from neurofibromatosis, including:

  • Pediatric neurofibromatosis tumor
    • Optic nerve glioma
    • Brainstem glioma
    • Glioma
    • Astrocytomas
    • Meningiomas
    • Pheochromocytomas
  • Plexiform neurofibromas/neurofibromas
  • Malignant peripheral nerve sheath tumor
  • Learning disabilities, ADHD, and behavioral/social problems
  • Orthopedic complications
    • Scoliosis
    • Bony dysplasia
    • Tibial bowing/pseudoarthrosis
    • Sphenoid wing dysplasia
  • Ophthalmological manifestations
    • Lisch nodules
    • Optic nerve glioma
    • Papilledema
  • Vascular complications:
  • Cardiac complications of neurofibromatosis
  • Hearing loss
  • Hypertension
  • Headache
  • Seizures/epilepsy
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 Directors

Kristin Hackeman, BSN, RN, CPEN
Neurofibromatosis Clinic Program Coordinator

Pediatric Neurology
Neil Friedman, MBChB
Manikum Moodley, MD
A. David Rothner, MD

Adult Neurology
Glen Stevens, DO, PhD

Pediatric Neuro-oncology
Tanya Tekautz, MD

Pediatric Oncology
Peter Anderson, MD

Medical Genetics
Vickie Zurcher, MD
Allison Schreiber MS, LGC

Ophthalmology
Andreas Marcotty, MD
Elias Traboulsi, MD
Arun Singh, MD

Otolaryngology/ENT
Erica Woodard, MD

Pediatric Cardiology
Francine Erenberg, MD

Orthopedic Surgery
David Gurd, MD

Pediatric Neurosurgery
Violette Recinos, MD

Dermatology
Joan Tamburro, DO

Plastic Surgery
Francis Papay, MD

Neuropsychology
Patricia Klaas, PhD

Pediatric Psychology
Kate Eshleman, PsyD
Michael Manos, PhD

Programs & Services

Programs & Services

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. They are 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 Spiritual Care Department 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.

NF Advocacy

NF Advocacy

Cleveland Clinic NF Family Day

Cleveland Clinic Center for Pediatric Neurosciences 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.

Resources

Resources

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

Members of our Neurology Team can be seen at Cleveland Clinic Main Campus:

S Building - Cleveland Clinic Main Campus
9500 Euclid Ave
6th Floor
Cleveland, OH 44195

For information or to make an appointment with our neurology team, please call 216.442.5069.

Pediatric Oncology

Members of our Oncology Team can be seen at Cleveland Clinic Main Campus:

Cleveland Clinic Children's Outpatient Center – R Building
8950 Euclid Ave
Cleveland, OH 44106

For information or to make an appointment with our oncology team, please call 216.444.5517.

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): 216.444.8184
For Medical Professionals

For Medical Professionals

Patient Referrals & Second Opinion

If you are coming to Cleveland Clinic through a referral or second opinion request from an outside hospital, please send the following medical records in advance of your appointment in our clinic:

For Pediatric Neurosciences:

  • Any prior evaluation or reports from healthcare physicians
  • Results of all prior studies including laboratory tests results, genetic test results, pathology reports (where relevant), EEG reports (where relevant), and radiology reports
  • All MRI and other neuroimaging studies on a CD (or upload to our secure website ***)

The above should be sent to:

Center for Pediatric Neurosciences
9500 Euclid Avenue, S60
Cleveland, OH 44195
Attn: Kristin Hackeman, BSN, RN, CPEN

For Pediatric Oncology/Hematology:

  • Most recent progress/office notes
  • Treatment summary and treatment therapy roadmaps
  • Operative report
  • Discharge summary
  • Pathology specimen/slides and reports
  • Recent lab results
  • All MRIs on CD
  • Radiology reports
  • Genetic testing results, if relevant
  • Tumor markers, if applicable

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.

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): 216.444.8184

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.