Dr. Kevin Bielamowicz, or Dr. B to his patients, is a pediatric neuro-oncologist at the multi-disciplinary Neurofibromatosis (NF) Clinic at Arkansas Children’s Hospital (ACH).

We asked Dr. B to tell us more about NF’s symptoms, treatments and what Little Rock families can do to support NF research.

What is NF?

"NF is a group of genetic conditions, the most common is Type 1, or NF1. NF1 affects 1 out of every 3,000 people, regardless of gender or race. While many children with NF have family members with the condition, many do not have a family history."

What are the top signs and symptoms of NF?

"Flat dark patches on the skin called café au lait macules are often the first sign of neurofibromatosis. Consider discussing this with your pediatrician if your child has more than five of these dark patches. Other symptoms vary, but include learning and developmental needs, abnormal growth of the bones and increased risk for certain types of tumors and cancers, among other medical needs."

What are the standardsof care for those who have it?

Current standards of care for patients with NF include:

• A consultation with a geneticist to consider formal genetic testing for the condition

• An annual eye exam by an eye doctor familiar with NF

• Learning assessments to ensure any special needs are identified

• Screening for the most common cancers seen in NF — brain tumors in young children, benign tumors and sarcomas in older children and adults and breast cancer in women

• Management with a primary care provider in conjunction with our clinic

Can you tell us about the NF Clinic at ACH?

"Our clinic includes seven core members — a geneticist and genetic counselor, a neurologist, a neuropsychologist, an oncologist, a specialty nurse/clinic coordinator and a patient/family advocate. We follow all patients with NF and follow those with certain complications more often."

Can you tell us a little bit about your NF clinical trials and how Little Rock families can get enrolled?

"Clinical trials available for children with NF at ACH are novel treatments for tumors and cancers associated with NF. These studies are run by our Innovative Cancer Therapeutics Team. The overwhelming majority of people with NF will not need treatment for tumors or cancers, but any concerns should be evaluated by your pediatrician and our team if needed."

How can Little Rock families help end NF?

"In the current national crisis, I would start by engaging with the Arkansas Chapter of the Children’s Tumor Foundation (CTF) on social media. This organization promotes NF research, awareness and family support. As our community becomes safer and as financial circumstances improve for many, families can consider participating in one of the local CTF events and supporting either CTF or ACH (either the NF clinic or our Innovative Cancer Therapeutics Team) financially in the future."