Division of Neurology

Duke Neurofibromatosis Clinic

Affiliate of the Children's Tumor Foundation Neurofibromatosis Clinic Network (CTF-NFCN)

Duke Neurofibromatosis Medical Symposium - Saturday, October 4, 2008

The Duke University Neurofibromatosis Clinic will host a medical symposium in conjunction with the Children’s Tumor Foundation for patients and families, and other interested individuals. Dr. Fawn Leigh, Director, has designed the program to include topics relating to neurofibromatosis type 1 and type 2 to educate participants on the medical issues, testing, and treatment options available for those living with NF. The Duke Neurofibromatosis Team, including physicians and support staff, will be available to answer questions. In addition, John Riser, President of The Children’s Tumor Foundation (CTF) will present an update on advocacy in neurofibromatosis and research funded by the CTF.
Symposium details>>

Overview

Neurofibromatosis (NF), one of the most common genetic disorders, is characterized by the formation of tumors involving nerve tissue in the skin, subcutaneous tissue, cranial nerves, and spinal root nerves. Other abnormalities can develop in the skin and bones. The symptoms of NF can be varied and evolve over time. Because of the progressive nature of these conditions, the Duke Neurofibromatosis Clinic, under the direction of Fawn Leigh MD, provides ongoing, specialized multidisciplinary care that is customized according to each patient’s medical, laboratory, and surgical needs.

Specialists in neurology, neuro-oncology, medical genetics, neurosurgery, ophthalmology, neuro-otology, plastic surgery, cardiology, learning disabilities, and rehabilitative services work together to address the multiple complications and complex management challenges that can accompany this condition. Our experienced professionals use state-of-the-art equipment and are at the forefront in research and testing of promising new therapies. The multidisciplinary Duke Neurofibromatosis Clinic offers comprehensive diagnosis, treatment and support for patients with neurofibromatosis and their families.

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What is Neurofibromatosis?

Neurofibromatosis (NF) represents a genetic disorder of the nervous system, primarily affecting the development and growth of neural cell tissues. As a result of this disorder, tumors can grow on nerves. Such tumors result in skin changes and bone deformities. The neurofibromatoses consist of three clinical types:

Type 1 (NF1), also known as von Recklinghausen disease. NF1 is the most common type, occurring in one of every 4,000 births. It affects an estimated 100,000 people in the United States. It is long lasting (chronic) and mostly affects nerves of the outer parts of the body (peripheral nervous system). Hallmark features include café au lait spots, neurofibromas, Lisch nodules, sphenoid hypoplasia, and optic gliomas. Learn more>>

Type 2 (NF2), also known as bilateral acoustic neurofibromatosis. NF2 is rarer, appearing in one in 30,000 to 40,000 births. People with NF2 usually develop tumors on the nerves in their ears, causing hearing loss, eventual deafness and problems with balance. NF2 may also involve tumors along the spinal cord. Learn more>>

Schwannomatosis is a recently recognized type of neurofibromatosis that occurs rarely. Researchers do not fully understand what causes the tumors and the intense pain that are characteristics of the disorder. Learn more>>

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Research

Members of this multidisciplinary clinical team also engage in collaborative work with investigators in clinical research and the basic sciences. Areas of research emphasis include identifying biochemical markers and therapeutic targets and participating in therapeutic trials examining agents that target cell signaling pathways. In addition, Fawn Leigh, MD, has established a collaborative initiative with the Neuroproteomics Laboratory to utilize state-of-the-art biochemical technology to search for potential biomarkers of severe or progressive disease in NF-1.

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Neurofibromatosis Team

Physicians

Name	Specialty	Areas of Expertise
M. Tariq Bhatti, MD	Neuro-Ophthalmology (pediatric and adult)	Optic nerve disorders
Melanie Bonner, PhD	Neuropsychology	Learning disabilities
Herbert Fuchs, MD, PhD	Neurosurgery (pediatric)	CNS and PNS tumors
Gerald Grant, MD	Neurosurgery (pediatric and adult)	CNS and PNS tumors
Sridhuran Gururangan, MBBS, MRCP	Neuro-Oncology (pediatric)	Brain tumors
Ronald Kanter, MD	Cardiology	Vascular Dx, congenital heart defects
David Kaylie, MD	Neuro-Otology (pediatric & adult)	Acoustic neuroma, skull-based tumors
Fawn Leigh, MD Director	Neurology (pediatric & adult)	Seizures, paresthesias, weakness, developmental delay, headache
Corinne Linardic, MD	Oncology (pediatric)	Sarcoma
Jeffrey Marcus, MD	Plastic/Craniofacial (pediatric & adult)	Facial reanimation, craniofacial reconstruction
Charles Maxfield, MD	Radiology
Marie McDonald, MD	Genetics (pediatric & adult)	Cancer genetics
Jeremy Rich, MD	Neuro-Oncology (adult)	Brain tumors
Richard Riedel, MD	Oncology (adult)	Sarcoma, malignant peripheral nerve sheath tumors
Debara Tucci, MD	Neuro-Otology (pediatric & adult)	Acoustic neuroma
Gordon Worley, MD	Neurodevelopment (pediatrics)	Autism
Terri Young, MD	Opthalmology (pediatric & adult)	Ophthalmic genetics

Nurses and Staff
Name	Role
Jan Fitch	Physical Therapy
Elizabeth Rende, RN, MSN, CPNP Clinic Coordinator	Pediatric Neurology Nurse Practitioner
Sheila Rittgers, MSW	Social Work

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Referrals and Appointments

The Duke Neurofibromatosis Clinic is dedicated to providing comprehensive medical and surgical care to children, adolescents and adults with NF1 and NF2. Patients will receive diagnostic evaluations, routine follow-up assessments and coordinated, multidisciplinary care.

Director:	Fawn Leigh, MD
Clinic Coordinator:	Elizabeth Rende, RN, MSN, CPNP
Appointments:	919-668-0477
Referral Fax:	919-681-8943

Primary Location:

Duke Children's Hospital & Health Center

2301 Erwin Road, Durham, NC 27710

Directions

Additional Locations:

Patients may also be seen by Duke neurofibromatosis specialists at the following locations:

Duke Eye Center

2351 Erwin Road, Durham, NC 27710

Directions

Duke University Hospital

2301 Erwin Raod, Durham, NC 27710

Directions

Lenox Baker Children's Hospital

3000 Erwin road, Durham, NC 27705

Directions

How You Can Help

Get Involved with the Local Chapter of Children's Tumor Foundation

Patients, parents, families and friends of NF can be involved in activities and support groups with the North Carolina Chapter of the Children's Tumor Foundation. For more information, please contact Stephanie Yolish at syolish@ctf.org or 919-297-4708.

Ways to Give

The care we provide at the Duke Neurofibromatosis Clinic benefits the patients and families who come to Duke every year from around the region, the nation, and the world to find healing and hope for NF.

For more information about the many opportunities available to help the Duke Neurofibromatosis Clinic, please visit the Philanthropy and Gift Opportunities section of this web site. We are sure you will find an option that is personally rewarding. No matter which route you take, your generosity will make a difference in the lives of our young patients and their families.

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Duke Neurofibromatosis Clinic

Overview

What is Neurofibromatosis?

Research

Neurofibromatosis Team

Referrals and Appointments

Primary Location:

Additional Locations:

How You Can Help

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