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Dozens of Nova Scotians gathered once again for a fundraiser which raises awareness of a rare genetic condition.
Dozens of Nova Scotians gathered once again for a fundraiser which raises awareness of a rare genetic condition. Organized by Amy Demone, the “Some Run” was held at Oakfield Park in Oakfield, N.S.
, for her 13-year-old daughter, Olivia, who has Ataxia-telangiectasia . AT is a rare, progressive genetic neurodegerative disorder which affects the nervous system, immune system, and other systems in the body like muscle control. Olivia is one of only a few dozen children diagnosed with AT in Canada.
Download the CTV News App for breaking news alerts and video on all the top stories People from the community showed up both in person and virtually to follow Olivia as she led the Some Run.
“Olivia is doing really good, she’s very independent, she’s out doing camping and activities so we try to get her out and do as much as we can,” she said. Money raised from the event goes toward the A-T Children’s Project to find treatments for the condition.
“They research for cares, treatments, right now there is a treatment available that was approved by the FDA so we now just need to get it approved here in Canada, and it helps with the ataxia part of the disease,” said Amy at the run on Saturday. For more Nova Scotia news, visit our dedicated provincial page
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