30 Sep 2021 New clinic opens to treat disorder that affects 2.5 million people annually

By Stefanie Brazile

So many families travel to Arkansas Childrens’ Hospital to find specialized services. However, turning 18 leaves some patients searching for continuity of care. Until recently, that was the case for adults living with a medical condition called neurofibromatosis, or NF.

NF is a genetic disorder that causes tumors to grow on the nerves and can include tumors in the brain and spinal cord. Annually, one in 3,000 births has NF. It affects all genders and ethnicities equally. Although there are 60 clinics in the NF Clinic Network, there wasn’t one in Arkansas until recently. Fortunately, Dr. Santos Horta and the University of Arkansas Medical Sciences – Winthrop P. Rockefeller Cancer Institute decided to develop the Adult Multi-Disciplinary NF Clinic.

Lesley Oslica raises money for NF research and programs as the Arkansas Chapter President of the Children’s Tumor Foundation. Oslica’s 30-year-old daughter, Katie, was diagnosed with the disorder when she was 10 and received care at Arkansas Children’s Hospital until she was 18. But then she aged out and did not have a team of specialists helping to navigate her care.

The new clinic will help more than 700 adult Arkansans living with NF. 

“As a neuro-oncologist, I have been trained to treat those problems and also know what kind of screenings are needed for patients to have a better quality of life,” Horta said. “There are over 700 [adults] affected with neurofibromatosis, but no specialized clinic. Therefore, those patients must go out of state to be treated. With the NF clinic, they will be seen by someone that understands their needs. Also, we want to bring clinical trials to offer to those patients.”

Oslica said that her family is excited about the new clinic. “Since Katie met Dr. Horta, she has a great sense of relief and hopes that she will receive care and medical advice she hasn’t had in a long time. She will have a team of doctors helping her navigate the difficult journey of living with NF.”

Horta completed a fellowship in research at the Neuro-immunology Laboratory at the Mayo Clinic in Rochester, Minnesota, and a clinical fellowship in neuro-oncology at Henry Ford Hospital in Detroit. She served a residency in neurology at the University of Minnesota. Horta also received the McDonald Fellowship from The Multiple Sclerosis International Federation. Horta has worked at the Cancer Institute for a year. She is also a Neuro-Oncology Assistant Professor at the UAMS College of Medicine. 

“I went into my field because of the patients,” Horta said. “The rapport that I have with my patients is what makes me go to work every day.”

Horta said she loves the people, the city, and the outdoors of Central Arkansas. She is married to William Cossens and lives in Little Rock.