Saturday walk to raise awareness, money for rare genetic disorder

INDIANAPOLIS — On Saturday, 14-year-old Amari Turner, staff from Riley Hospital for Children and the community will walk to raise awareness about a little known condition with a big impact.

Neurofibromitosis, or NF is a collection of three genetic disorders that cause tumors to develop along the nerves and brain.

"If you put all the patients with Cystic Fibrosis, Muscular Dystrophy and Huntington's Disease together, there are actually more patients affected with N F, than with all those other diseases combined." Explains Dr. Steven Rhodes, an Assistant Professor of Pediatric Hematology and Oncology at Riley Children's Health.

"It's been stressful, hard, I'm tired a lot," Turner said.

When Turner was little, her parents noticed there were some delays and several spots they thought were birthmarks but turned out to be cafe au lait spots, which are common for children with NF.

There is currently no cure, but in 2020 the Food and Drug Administration approved a new medication to treat NF. It helps stop tumors from growing and can shrink them while improving overall symptoms.

Turner has a team of experts at working to keep them healthy.

"We actually have a multidisciplinary, NF program that sees both pediatric and adult patients." Explains Dr. Rhodes. "We have multiple sub-specialties involved. So really, it's a team effort of all of these individuals, and some specialists working together to provide really comprehensive care."

"Appointment days are long. We traditionally see her team here at Riley, every three months. On those days, we'll see her neurologist, her oncologist. We have an advocate for her for school. We'll see her nurse and then other doctors that are instrumental in the research for NF," Turner's mom Alicia Turner said.

The walk is taking place at Locust Grove inside White River State Park from 10 a.m. - 1 p.m. To register or donate, click here.