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Neurofibromatosis (NF) Clinic

Neurofibromatosis type 1 (NF1) is one of the most common genetic disorders, affecting approximately 1 in 3,000 individuals. Children with NF1 frequently have noncancerous tumors on their skin, but it can also affect other organ systems, such as your child’s skeletal, cardiovascular and nervous systems. To help manage this complex condition, Akron Children’s has created a neurofibromatosis (NF) clinic with specialists from developmental/behavioral pediatrics, genetics, neurology, oncology and ophthalmology. Other specialists are also available to support your child’s individual needs.

 

If your child has NF1, they may experience frequent headaches, uncontrolled seizures, ADHD, skeletal abnormalities, blood pressure issues, gastrointestinal problems and other conditions requiring the care of numerous specialists. They may also need chemotherapy or surgery. Symptoms may change as your child grows, so regular monitoring to address your child’s ongoing medical and developmental needs is important to minimize the risk of more serious complications.

The NF clinic allows your child to see all the specialists they need in one day, while providing enhanced care coordination and access to the most current treatments available. Patients are seen from birth to age 25. New cases are accepted until age 21.

The NF clinic also provides coordinated care for children with similar conditions. This includes NF2, which is less common than NF1 and usually diagnosed in early adolescence, and schwannomatosis, a condition that causes a different type of noncancerous tumor.

Patient education and support

The NF Clinic is committed to providing patient education to help you better understand your child’s condition and how to advocate for your child. Parent mentors are also available to serve as a resource for you, especially if your child has been newly diagnosed.

 

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Locations

Contact Neurofibromatosis (NF) Clinic

330-543-8050

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NeuroDevelopmental Science Center
Akron Children's Hospital NeuroDevelopmental Science Center, Akron
Considine Professional Building
215 West Bowery Street
Suite 4400
Akron, Ohio 44308
Fax: 330-543-8054
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Map & directions

Our Doctors/Providers

Physicians/Providers:

Jacqueline Branch, MD, FAAP

Developmental/Behavioral Pediatrician

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Matthew Ginsberg, MD

Pediatric Neurologist

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Jason Laufman, MD, FACMGG

Geneticist

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William Lawhon, MD

Pediatric Ophthalmologist

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Stephen Steiner, MD, PhD

Pediatric Neurologist

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Erin Wright, MD

Pediatric Neuro-Oncologist; Director, Shannon E. Wilkes Targeted Therapy Program; Co-Director, Neurofibromatosis Clinic

Accepting New Patients

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Nurse Practitioners/Physician Assistants:

Alexis Judd, PA-C

Physician Assistant

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Other Providers:

Kara Vitalone, MS, CGC

Licensed, Certified Genetic Counselor

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https://www.akronchildrens.org/files/COVID-Inforgraphic.html

What Should Families Expect When They Come for an Appointment?

At Akron Children’s, your child’s health and safety is our priority. Please continue to bring your child for wellness visits, vaccinations or sick care appointments that keep children healthy. We want to assure you that we have taken additional precautions to ensure a safe environment for your child and family. The following are additional safety efforts, in addition to our normal cleaning protocols, that we are taking to help you be comfortable bringing your child to an appointment.

Limiting the Number of Caregivers and Face Covering

The number of caregivers permitted to accompany a child to an appointment is dependent on the department you are visiting. Everyone visiting an Akron Children's facility is asked to wear masks or face coverings, except for kids under 2 or those with sensory issues. Masks will be provided for visitors who do not bring their own.

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Checking In and Screening of Visitors

Akron Children's now offers Mobile Check-in to limit your exposure to others. You'll receive a text an hour before your child's appointment arrival time. Click the link in the text when you reach the Akron Children's facility for your child's appointment. You will receive a confirmation text that reminds you to wait in your car. Once we determine appropriate spacing is available inside the building, you'll receive a third text to let you know it's OK to come in for your appointment.

Immediately upon entering the building, your temperature will be taken, either by a thermal scanner or a greeter who will also ask you a few questions.

If you are in a waiting room, you’ll notice signs and a limited number of chairs. This is to remind our patients to keep 6 feet of physical distance between your family and others.

Precautions If You Suspect Your Child Has COVID-19

Call your child’s healthcare professional if your child is sick with fever, cough, or difficulty breathing and has been in close contact with a person known to have COVID-19, or if you live in or have recently traveled from an area with ongoing spread of COVID-19. Your health care professional will work with Ohio’s public health department and the CDC to determine if your child needs to be tested for COVID-19.

View all the safety precautions Akron Children's is taking.