When Joy offered to create a quilt for MRSA, she could not have known how deeply friendship would shape every stitch. Inspired by her granddaughter Stella, butterflies and the Friendship Star pattern, this handmade quilt tells a story of love, hope and community.

Join us September 27 at King’s Park for the 2026 Ride or Stride for Rett Syndrome Walk & Family BBQ. Register to fundraise, join the walk, make a donation or help us spread the word.

Heading back to school with Rett syndrome? Explore educational resources for families, educators and classmates to help build understanding, communication and meaningful inclusion — plus learn how MRSA can support your school team throughout the year.

Rett syndrome is almost always diagnosed in girls. Atharv is one of the rare exceptions.

That rarity carried an added weight. Nearly every resource, study, and support group the family found was about daughters, not sons. When your child's condition barely appears in the medical literature, you are largely on your own to find answers.

That is why Atharv's family chose to share his story, and why we are proud to help tell it. The more clinicians and families understand that Rett syndrome can affect boys, the sooner the next child like Atharv can be recognized and supported.

Atharv doesn't speak, but he communicates clearly through his eyes, his smile, and the people he loves. His family says it best: he is not defined by his diagnosis. He is defined by his courage, his kindness, and the joy he brings.
To the clinicians, caregivers, and advocates in our network: awareness is often the first step toward earlier diagnosis.

How do we make sure the rare presentations don't get missed?

💜 What happens when parents refuse to accept silence as an answer?

In the 1980s, a handful of Manitoba families facing Rett syndrome found each other, pieced together their knowledge, and lit the spark that became the Manitoba Rett Syndrome Association.

Their story is one of courage, persistence, and community. From challenging early misguidance to building today’s support network, their journey shows why no family should ever walk this path alone.

👉 Read their story, share it, and help us keep changing lives!

What does it take to turn a personal journey into a movement for change? 💜

Meet Ema, a vibrant 17-year-old who loves comedies, music, and swimming. She also lives with Rett syndrome, a rare neurological disorder that impacts communication and mobility. Her mom, Trish, spent years searching for answers before finally receiving a diagnosis.

That journey led Trish to the Manitoba Rett Syndrome Association (MRSA), where she now serves as president, helping families find the resources, support, and community she once had to fight to discover.

👉 Read Ema’s story and learn why raising awareness matters. Together, we can build a Manitoba where every person with Rett syndrome is seen, understood, and celebrated.

Join us this fall at the Ride or Stride walk, share this post, or visit rettsyndrome.mb.ca to get involved.

#MBRett #pRETTyAwesome #RettSyndromeAwareness #RareDiseaseAwareness #Manitoba #CommunityMB #DisabilityInclusion