Rett syndrome awareness month
pRETTy awesome campaign debuts Oct. 1 for Rett syndrome
Across the globe, October is known as Rett syndrome Awareness Month. Rett syndrome is a genetic disorder that primarily affects women ages 4 to 45. There are only 20 known Manitobans currently living with Rett syndrome, and 15-year-old Ema Guimond of Oak Bluff was diagnosed with Rett syndrome in 2013.
Rett syndrome was first observed in 1954 when Dr. Andreas Rett identified several body movement behaviour patterns in two girls. Later in 1982, Dr. Bengt Hagberg once again noted these movement symptoms.
According to Trish Guimond, Ema’s Mom, significant advancement came in 1999 when Ruthie Amir discovered the MECP2 gene. Mutations in this gene cause Rett syndrome, confirming it as an X-linked dominant disorder primarily affecting girls.
Individuals living with Rett syndrome may experience slower intellectual processing, miss developmental milestones or have a lack of control over their body movements.
“Ema is our youngest of five children. She’s just like any other teenage girl,” explained Guimond.
Guimond is the current President of the Manitoba Rett Syndrome Association (MRSA), a registered organization that aims to promote awareness about Rett syndrome and share resources with Manitobans. Ema’s Mom and her Dad, Lionel Guimond, have been involved with the organization since receiving Ema’s diagnosis in 2013.
Guimond wants to raise awareness about Rett syndrome in rural communities, she mentioned that many people go undiagnosed with Rett syndrome because it is so rare.
“We know there must be more in the province,” she added. Later noting that if people know what Rett syndrome is, more people might look into getting a proper diagnosis.
Ema’s Rett syndrome diagnosis gave some closure to her family. Guimond explained that she first heard of Rett syndrome when a friend asked her about it. “We looked it up online, and Ema had many similar characteristics.”
After their research, Ema had a genetics appointment which confirmed that she had Rett syndrome.
“The Rett diagnosis gave us information so we could move forward,” said Guimond, who added that Ema was initially diagnosed with Autism.
Once they received the diagnosis, they were able to access more resources and information to help them navigate Rett syndrome.
Currently, Manitobans looking for more information on Rett syndrome can visit www.rettsyndrome.mb.ca. The website features resources and information on Rett syndrome. Starting Oct. 1, an updated version of the webpage will launch. “The new website will have updated resources and contact information,” explained Guimond.
“We want to make us (MRSA) more available to Manitobans by providing resources for the province.”
In honour of Rett syndrome Awareness Month, Guimond and fellow Manitoban Rett syndrome Mom Sharon Romanow have started a new campaign: pRETTy awesome.
Through pRETTy awesome, Western Canada will unite to educate and spread awareness about Rett syndrome.
“We want to let people know that the children living with Rett syndrome are not just the diagnoses themselves. They just live with Rett syndrome. We want to show them how amazing these kids are,” Guimond said.
The pRETTY awesome campaign will launch across Western Canada on Oct. 1 and hope to spread to the remaining provinces next year. Guimond will post pRETTY awesome updates to the MSRA website so you can follow along on the campaign’s journey. pRETTY awesome is graciously sponsored by Acadia Pharmaceutical (Canada) Inc., which is helping fund the initiative.
For now, the MRSA hosts an annual walk and barbeque for friends and families impacted by Rett syndrome. This year’s walk is on Oct. 5 and will be held at King’s Park. “We always invite family and friends to come and join us. We use it as an opportunity for families who live with Rett syndrome a chance to do a walk and connect with each other,” said Guimond.
She added that you can join them for their walk, but barbequed meals will only be provided to immediate family members.
Canada will honour Rett syndrome Awareness Month on Oct. 29 for Light Canada Purple Day.
“It’s (Light Canada Purple Day) is a Canada-wide campaign where buildings from the east coast to the west coast will light purple,” said Guimond.
The colour purple was chosen to represent Rett syndrome from discussions made through an online forum.
“They chose a “girly” hue that wasn’t pink, as pink had already been closely linked to breast cancer awareness. At the time, it was believed that only females had Rett syndrome,” Guimond explained.
You can support Rett syndrome Awareness Month and Light Canada Purple Day by lighting up your building in purple or wearing purple on Oct. 29.
Guimond added, “You can make a positive impact on Manitobans affected by Rett syndrome by engaging with our social media and spreading awareness. By participating in fundraising events or volunteering your time, you can further boost the efforts to improve the lives of those impacted by Rett syndrome.”
You can also consider donating to the MRSA.
