Group Raises Money and Awareness to Find a Cure for Rett Syndrome

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ANKENY, Iowa –You can learn a lot through four-year-old Alli Reinsmoen’s eyes. "She communicates completely through her eyes," said her mom Courtney Reinsmoen.

You can tell what she likes. "Alli loves Scooby Doo more than anything in this world," said Courtney.

You can also tell what she doesn't. Dad Rob Reinsmoen explained, "Yes is looking at you, and looking away would be a no."

Her eyes are also what she uses to have a conversation.  Alli has Rett syndrome. She uses a device called Tobii to communicate. “Tobii works with an eye gaze. The lower part of the Tobii here, can basically track her eyes. She has these squares she looks at and the Tobii speaks for her," explained Rob.

Rett syndrome is a genetic mutation that isn't inherited. It's almost exclusively in girls. Alli was meeting her milestones and started regressing when she was one. "She suffers from seizures. She's unable to walk, unable to talk, and really has no functional use of her hands," said Courtney.

"As of right now there's no cure or no treatment for Rett syndrome," added Courtney.

The Reinsmoens will be one of 15 teams raising money for support, awareness, and money at The Cure Rett Iowa Strollathon and Auction on Saturday. Kelly Zwald, who started the event three years ago, said, "All of the money goes to Rettsyndrome.org and their focus is really on funding research and funding support."

The event will include face painting, a balloon, artist, petting zoo, food, and drink. It’s also an opportunity for people with Rett Syndrome and their families to get together. "They're just amazing little girls, and they have so much potential, and you can see it in their eyes," said Courtney.

Alli's team this year is called "Alli's Gang, Ready to Solve the Rett Mystery," in honor of Scooby Doo.

The Cure Rett Iowa Strollathon & Auction Warehouse Edition is from 11 a.m. to 2 p.m. It’s at Kinzler Construction Services, which is located at 700 SE Oralabor Road in Ankeny.

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