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.When Turner was little, Turner's 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."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.

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. TOP STORIES: Video: Police body cam captures 'zombie deer' encounter in Cincinnati, more spotted through Tri-State | 16-year-old Whiteland HS student killed in Greenwood shooting that prompted school lockdowns | Greenwood man signs agreement to avoid prosecution in 'scary' hotel encounter | IMPD's Mounted Police Unit to leave property by December | Four Indiana State University football players among those killed, injured in...

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