October is Rett Syndrome awareness month

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by Brandon Mayer
Local Journalism Initiative Reporter

The month of October is globally recognized as Rett Syndrome Awareness Month. However, no mention of the movement could be found on the Municipality of North Grenville website. Council has been bombarded recently with special requests to have days, weeks, and months officially named after important events or causes in the Municipality. During the Council meeting on October 5, Deputy Mayor McManahan even joked, “I hope we’re not running out of weeks.”

The lack of municipal recognition has not stopped many in the Municipality and surrounding areas from recognizing the important month with lawn signs. Interested Ontarians were able to order a lawn sign in September from the Ontario Rett Syndrome Association (ORSA), in preparation for displaying the sign this month.

Rett Syndrome is a rare genetic disorder that primarily affects girls. It involves changes in brain development that lead to a gradual loss of motor skills and speech. Those with Rett Syndrome are born with the condition, but there are typically no signs of it for up to the first 18 months of life. Skills that develop normally in infants and toddlers such as walking and crawling are subsequently lost over time in those suffering from Rett Syndrome.

There is no cure for Rett Syndrome; but research continues to pursue new treatment options. Current treatment aims to improve communication and motor skills.

One important purpose in raising awareness of Rett Syndrome is to help increase participation in the ORSA’s signature fundraising event, Run4Rett. The run traditionally takes place in Richmond Hill, ON, but this year’s run is the second in a row to be held virtually, due to safety concerns caused by the COVID-19 pandemic. Those interested in helping to raise awareness or funds to support Rett Syndrome research are invited by ORSA to “run whenever, wherever” according to the organization’s website, with funds being raised through an associated online account set up by the runner. Runners can run alone, with friends, or with family.

Proceeds raised by Run4Rett are used to support several causes, including three Rett Syndrome clinics in Ontario, the Hope Fund (which provides grants to Canadian researchers), a bi-annual family conference and medical symposium, and the Canadian Rett Syndrome Registry. Registration for Run4Rett closes on October 31.

Local residents interested in learning more about Rett Syndrome are invited to visit the Ontario Rett Syndrome Association Website at https://www.rett.ca.

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