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Community Rallies for Olivia's Fight Against Ataxia-Telangiectasia
4 Oct
Summary
- Fundraiser held at Oakfield Park for 13-year-old Olivia with rare AT.
- Ataxia-telangiectasia is a progressive neurodegenerative disorder.
- Funds support A-T Children's Project for treatments and research.
In Oakfield, Nova Scotia, a community gathered for the 'Some Run' fundraiser, an event dedicated to raising awareness for Ataxia-telangiectasia (AT). The fundraiser was organized by Amy Demone for her 13-year-old daughter, Olivia, who is one of only a few dozen children in Canada diagnosed with this rare, progressive genetic neurodegenerative disorder.
Olivia, who has AT, led the "Some Run" participants at Oakfield Park. The condition impacts the nervous system, immune system, and muscle control. Despite its challenges, Olivia remains active, participating in various activities like camping. The event saw community members attending in person and virtually to support her cause.
Proceeds from the 'Some Run' benefit the A-T Children's Project, an organization focused on researching cures and treatments for AT. Amy Demone noted that an FDA-approved treatment for ataxia symptoms is available, with efforts underway to secure its approval in Canada. The event highlighted community solidarity and hope for advancements in treating this rare disease.
