‘Everybody’s here for her’: Run raises money, awareness for rare genetic condition

Nova Scotians gathered Saturday to raise awareness and money for Ataxia–Telangiectasia, a rare genetic condition.

Nova Scotians gathered Saturday to raise awareness and money for a rare genetic condition.

The ‘Some Run’ was held at Oakfield Park in Oakfield, N.S., for the Ataxia–Telangiectasia (AT) Children’s Project. Runs were held in communities across North America, and the one in Nova Scotia was put on by Amy Demone, whose daughter Olivia has AT.

“Ataxia–Telangiectasia is a disease that affects your immune system and your abilities, so you lose your muscle control,” said Demone.

She said her 12-year-old daughter is one of 44 children in Canada with the condition. Olivia was diagnosed in 2018.

“She is a fun, happy girl. She’s very independent,” said Demone.

Olivia’s AT Warriors came out in full force Saturday morning to support her. Funds raised go toward research to find a cure for AT or treatment for the condition.

“She loves doing these things and we’re very glad that everybody’s here for her,” Demone said.

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