Saskatchewan Rett Syndrome Association

Check out these 2 AAC camps happening this fall in Alberta! See in the comments for help with funding, generously offered by Rssa Alberta

Augmentative + Alternative Communication Camp Alberta | Department of Communication Sciences and Disorders Augmentative and Alternative Communication (AAC) is a set of tools and strategies that can help people who are unable to rely on verbal speech to communicate. AAC systems may include gestures or signs, picture/word boards, mobile devices with communication apps, and/or speech generating communicatio...

Look at this amazing support! Thank you U16 Maurauders!

In December, we held a Rett Syndrome Awareness Night in honor of one of our sisters, Avery. Thank you to everyone for your incredible support! Together, we raised $1,347.50.

📢 URGENT: Canadian Rett Syndrome Families Speak Out!
Canada’s Drug Agency (CDA) has refused to cover DAYBUE® (trofinetide). This decision leaves hundreds of Canadian children and adults with no publicly funded access to the first and only Health Canada approved treatment for Rett syndrome.
The Canadian Rett Syndrome Coalition, with support from the Canadian Organization for Rare Disorders (CORD), has formally asked the CDA to reconsider through a Time-Limited Managed Access (TLMA) program – a path that’s been used before for other rare diseases. This is not an unreasonable ask. This is equity. This is compassion. This is what our loved ones deserve.
👉 We’re calling on the CDA and all provinces and territories to do the right thing. Reconsider. Provide access. Every Rett syndrome patient and family deserves to have access to better health outcomes, including treatment options that can improve their condition and quality of life.

On June 11, 2025, Taysha Gene Therapies shared an encouraging program update at the 2025 IRSF Rett Syndrome Scientific Meeting in Boston (June 9–11), highlighting new findings from the TSHA-102 gene therapy clinical trials.

It is really positive news 💜

For families and clinicians who have long been told there is little that can be done for patients with Rett syndrome after early childhood, this update represents a powerful shift. Children, young people and adults with Rett syndrome are now regaining abilities once considered permanently lost.

All of us at Reverse Rett share the cautious optimism and hope of Rett families in the UK and around the world 💜

You can read our 'key takeaways' from the update from Taysha Gene Therapies at the link below 🙏

https://www.reverserett.org.uk/promising-progress-in-the-taysha-gene-therapy-trial-reported-in-boston/