Recognizing Rett Syndrome Awareness Month

On Tuesday October 8, I spoke in the Manitoba Legislature on a Member's statement to recognize that October is Rett Syndrome Awareness Month.

Rett Syndrome Awareness Month

Hon. Jon Gerrard (River Heights): Rett syndrome, Madam Speaker, a rare neurologic condition, is being recognized this month, which is Rett Syndrome Awareness Month.

This condition, characterized by typical repetitive handwashing hand movements, primarily affects girls and more rarely and more severely boys. It can lead to severe impairments, affecting nearly every aspect of a child's life, including the ability to speak, walk, eat or breathe easily.

It is like having the symptoms of autism, cerebral palsy, Parkinson's, epilepsy and anxiety disorder all at once. It is caused by one of many different mutations on the X chromosome in a gene called MECP2. The extent of the disability varies from mild to severe depending on the specific mutation.

Research is underway for treatments, including gene therapy, medications and neurohabilitative therapies. Earlier this year, Dr. Mojgan Rastegar received an award from the Ontario Rett Syndrome Association to establish the human Rett syndrome brain biorepository laboratory at the Children's Hospital Research Institute in Manitoba.

The grand opening of the lab was September 20th and was well attended by parents from Ontario, British Columbia and Manitoba. The lab is a unique resource in Canada and is essential to develop therapeutic strategies for this severe disorder that currently has no cure. As well, a new Rett clinic will open October 17 at the SSCY centre.

I recently participated in the Ride or Stride for Rett Syndrome fundraiser and barbeque at King's Park on September 21st. It was a happy occasion, with many family members, concerned friends and relatives present.

I thank Trish Guimond and Sharon Romanow, who participated and who are here today in the gallery.

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