Neurofibromatosis Clinic

The Comprehensive Neurofibromatosis (NF) Clinic at Le Bonheur Children’s Hospital with St Jude Children Research Hospital was accepted as a Comprehensive Neurofibromatosis Center into the Neurofibromatosis Clinic Network (NFCN) in January 2026. The NFCN is the first nationwide network dedicated to improving NF clinical care and integrating research, the NFCN recognizes clinics that provide multidisciplinary care, support clinical research and foster patient education.

Since 1992, Le Bonheur Children’s Hospital has been proud to host a specialized medical home for patients with Neurofibromatosis Type 1 (NF1) and related conditions, a vision brought to life by Eniko Karman Pivnick, MD. Recognizing the critical need for a multidisciplinary approach, Dr. Pivnick utilized her unique expertise as an ophthalmologist, pediatrician and geneticist to establish a comprehensive clinical home for families in our region. In 2026, we are honored to celebrate the 34th anniversary of the Neurofibromatosis Clinic at UT Le Bonheur Pediatric Specialists in Memphis, Tenn.

The NF aims to get timely diagnoses and provide coordinated, multidisciplinary care for individuals living with this complex and often debilitating condition. One of our core missions is to enhance understanding, correct misconceptions about NF1 and related conditions and ensure our patients have access to top subspecialists.

Our program is a partnership among several organizations – Le Bonheur Children’s Hospital, The University of Tennessee Health Science Center, Semmes Murphey Clinic, Campbell Clinic Orthopedics, Hamilton Eye Institute, and St. Jude Children’s Research Hospital.

At Le Bonheur, your child’s multidisciplinary team will include physicians representing ophthalmology, genetics, plus specially trained nurses, scientists and support staff. Through this collaboration, the team determines the best treatment plan for each child.

Prepare for your Visit

To prepare for your visit, make sure you gather the following information for your appointment:

family medical history
medical records
- test results, including imaging studies (if applicable)
- ophthalmology visit note
- other records for surgery, neurosurgery, orthopedics, pathology (if a biopsy was performed), etc.
- genetic test results if available

What To Expect During Your Visit

During your visit to our clinic, you can expect a comprehensive and personalized evaluation tailored to your specific needs. Our team will begin by reviewing your complete medical background, including prenatal and delivery history, a detailed Review of Systems (ROS) and a three-generation family pedigree to better understand your genetic history. A thorough physical examination including a skin evaluation will be conducted.

As part of our commitment to advancing care, you may be invited to participate in our NF RedCap local registry or a clinical database. Should your condition require specialized intervention, such as the initiation of MEK inhibitors or treatment for complex concerns like optic pathway gliomas or malignant peripheral nerve sheath tumors (MPNSTs), we will facilitate a seamless referral to St. Jude Children’s Research Hospital to ensure you receive the most advanced care possible.

Locations

We provide care for children and adults at the following locations twice a month:

UT Le Bonheur Pediatric Specialists (ULPS) in Le Bonheur Outpatient Center, 51 N. Dunlap St., 3rd Floor
Le Bonheur Outpatient Center - East, 100 N. Humphreys Blvd.
St. Jude Children's Research Hospital

To make an appointment, you need a referral by primary care physician or subspecialist. They can make a referral here.

Clinic Information

Our dedicated UT Le Bonheur Pediatric Specialists (ULPS) NF Clinic team includes:

Eniko Karman Pivnick, MD, Clinic Director of the Neurofibromatosis Clinic
Amanda Rotenberry, FNP, Clinic Coordinator and Clinician
Nora Urraca, MD, PhD, Scientific Advisor and Manager of our REDCap Clinical Database
Jennifer Monteil, RN, NF Clinic Registered Nurse

Our St. Jude Children's Research Hospital NF Clinic team includes:

Melissa Perrino, MD, Co-Director of the Neurofibromatosis Clinic
Stacy Hines-Dowell, DNP, Clinician
Alise Blake CGC, Licensed Genetic Counselor
Leslie Taylor, Nurse Coordinator

Testimonial: Carrie Wylie

Think back to your adolescent years — you were probably focused on friends, getting your driver’s license, and planning for college. I never imagined I would become deeply involved in the neurofibromatosis community. When my daughter was diagnosed with NF1 as an infant, I was completely overwhelmed. The more I learned, the more I realized how critical a parent’s role is in this journey. Because NF1 affects every child so differently, active parental involvement is absolutely essential. That involvement means advocating for proper medical care and education, educating ourselves and others about this rare disorder, and supporting fundraising for research. Events like the Memphis NF Strong Walk have shown me how powerful it is when families come together to raise awareness and funds. As my daughter gets older, I’ve had to think outside the box about her transition into adulthood. Since she is unable to work due to medical complications from NF1, our focus has shifted to finding creative ways to help her live a meaningful and independent life. Connecting with other families completely changed our world. I started Special Needs Parents of the Midsouth on Facebook and later joined the Memphis Disability Network. What began as a personal struggle has grown into a way to advocate for both our NF1 families and the entire special needs community. This journey has taught me that parental, and family involvement isn’t just helpful — for a child with NF1, it is essential.

Community Outreach

Every year, the NF Clinic at Le Bonheur collaborates with the NF Network and the local community for the #NFStrong 5K Walk. For 15 years, this event has provided support to families affected by neurofibromatosis (NF) in Memphis. The mission of the network is to build a community by creating a supportive environment for individuals and families impacted by NF, raising awareness through advocacy for better care and visibility, and fueling progress with fundraising to support essential research and life-changing initiatives.

Founded in 1988 by individuals affected by neurofibromatosis, the NF Network is a nonprofit 501(c)(3) organization and serves as the leading national advocate for federal funding for NF research while building and supporting NF communities. It unites groups from across the country to address national issues related to NF. The NF Network aims to eliminate the health challenges, pain, isolation, and uncertainty that come with an NF diagnosis while providing a growing space for shared resources, the development of new tools, and the creation of innovative programs.

Learn more about the #NFStrong 5K Walk in Memphis here.

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