News and Events
Rett syndrome’s effects ripple through whole families — but kids with this rare, severely disabling condition can live remarkable lives
More exciting news for Rett syndrome awareness in Canada! The MRSA’s Trish and Ema Guimond participated in an interview and photoshoot for National Post to talk about all things #RettSyndrome and share their story with a national audience.
We are thrilled to see the stories of Manitoba families impacted by Rett shared across the country to take meaningful steps toward a greater understanding of this rare condition. Click the link to read the National Post article!
Rett syndrome’s effects ripple through whole families | National Post
Rett Life
At MRSA, we are thrilled to see Ema Guimond’s story launched as the first Remarkable Rett Story on the Rett Life website and Facebook page. Rett Life is a Canadian community hub for anyone impacted by Rett syndrome and includes disease awareness information, resources, and stories from Rett families. Sharing personal stories of people living with Rett syndrome not only raises the profile of this rare disease, but helps the wider community understand what makes our girls (and boys) so incredible!
Get to know Ema, our resident Swiftie and water sport enthusiast, by visiting www.rettlife.ca/rett-stories/ema. Keep an eye out on the Rett Life website for new stories coming soon from other Manitoban and Canadian families and subscribe to the newsletter to stay up to date!
Light Canada Purple
Join Manitoba and communities Canada-wide on October 29th, 2024, to raise awareness and support individuals impacted by Rett syndrome by illuminating your spaces in purple. Whether you choose to light a single porch light, hang a string of fairy lights, or create an elaborate display, your involvement will help highlight the significance of research, support, and understanding.
A few of the many notable landmarks across Canada that have participated in this initiative include the CN Tower, Niagara Falls, Esplanade Riel Footbridge, SaskTel Centre, High Level Bridge, S.S. Klondike, and BC Place.
Together, we can make a difference. Share your photos on social media using the hashtag #LightCanadaPurple to connect with others and inspire more people to join in. Let's turn the nation purple and show our collective strength and dedication to finding a cure and improving the lives of those living with Rett syndrome.
Ride or Stride for Rett Syndrome
We are nearing the start of Rett Syndrome Awareness Month!!
This year, we will once again be hosting our Ride or Stride for Rett syndrome Walk & BBQ to kick off Rett Syndrome Awareness Month. Mark your calendars for Saturday, October 5th, 2024, at 11 AM at Kings Park. A delicious lunch from Danny’s Whole Hog will be provided, so we kindly ask for an RSVP of immediate family members and/or support worker attending. Please RSVP by September 22nd, 2024. Your pRETTY awesome t-shirt packages will be available for pick up at the gathering. Hope to see you all there!
pRETTy awesome.
This initiative is the brainchild of two Manitoba moms who believe that families, friends, and caregivers can help individuals with Rett syndrome flourish, raise awareness and drive research progress. Together, they believe we can build a world that honours and empowers individuals with Rett syndrome to achieve their utmost potential. This initiative aims to spark conversations and raise awareness of the awesome individuals impacted by Rett syndrome. This condition presents rare and complex challenges, yet individuals living with Rett syndrome are much more than their diagnosis.
We are excited to have the Rett Syndrome Society of British Columbia, the Rett Syndrome Society of Alberta, and the Saskatchewan Rett Syndrome Association join us in its initial launch.
pRETTy awesome., is sponsored by Acadia Pharmaceutical Canada.