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.
-
Hoosier veteran publishes first book at 85, about wartime experiences
At an age when many people have settled into retirement, 85-year-old Brice Tressler is just getting started on a new chapter, literally.
Plainfield restaurants step up to feed families losing SNAP benefits
Two Plainfield restaurants are stepping up to make sure families don’t go hungry after losing their SNAP benefits.
The Colts QB believes it's a blip, not an omen
Three picks. Two fumbles. Shaky decision-making. All the bad habits that Jones seemed to have left in New York resurfaced in a performance the AFC South-leading Colts believe is a one-off.
Hancock County non-profit serving women sees sharp rise in need
As uncertainty continues, leaders at the Women’s Resource Center say they’re preparing for that number to grow, and they’re calling on the community to help them continue meeting demand.
