By Rosalind Russell – A brunch is being held at the Massey Legion next week to highlight TUBBS3, a rare genetic disease.
According to the release, organizers want to discuss the rare children’s disease in a playful, friendly atmosphere.
The disease is a defect in the TUBB3 gene, which helps build microtubules—tiny structures that act like the scaffolding and transport system inside nerve cells.
But, when the gene has a mutation, the nervous system may not develop or function normally.
Symptoms vary widely but can include eye movement disorders (such as CFEOM), developmental delays, muscle weakness or low muscle tone, seizures and brain malformations.
There can also be intellectual and social challenges.
A kid’s brunch is being held Monday, March 16th from 10 a.m. to 1 p.m. at the Massey Legion.
March 16th has also been designated TUBB3 Awareness Day in Canada.


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