Ontario Rett Syndrome Association

08/30/2026

⏳ The countdown is ON!
In just 2 weeks, we officially launch the Run 4 Rett: Coast to Coast Challenge!

📍 We’re going to cross over 7,000 km together, all while raising awareness and funds for Rett syndrome.
📆 Challenge begins Sept 20

08/25/2026

🔬 INVITATION TO PARTICIPATE IN RESEARCH: RETT SYNDROME CLINICAL TRIAL

A Phase 2 pilot study at Holland Bloorview Kids Rehabilitation Hospital in Toronto is evaluating Rett-T, an antioxidant cocktail, compared with placebo in children and adolescents with Rett syndrome.

The study will explore the potential safety and effectiveness of Rett-T, including its impact on motor function, as well as other areas such as behaviour, anxiety, sleep and seizures.

Interested in learning more or finding out if your loved one may be eligible?

👉 View the full study details and eligibility criteria: ClinicalTrials.gov: NCT04041713

Please contact the study team directly for information about eligibility and enrollment.

08/21/2026

🎉 Registration is NOW OPEN! 🏃‍♀️💜

👉 Register https://www.canadahelps.org/en/charities/ontario-rett-syndrome-association/events/2026-run-4-rett-coast-to-coast-challenge

Join Us In Person or Virtually!

The 2026 Run 4 Rett Coast to Coast Challenge kicks off on Sunday, September 20, 2026, and you can take part in person or remotely from anywhere!

📍 Join us in person in Richmond Hill, Ontario

Whether you’re running the route, taking a leisurely stroll, cheering from the sidelines, or simply coming to connect with friends and families, there’s a place for everyone! If you love the challenge and want to keep going beyond September 20, you can continue tracking your steps throughout the full month!

Sunday, September 20, 2026
Richvale Community Centre
160 Avenue Road, Richmond Hill, Ontario

Event Schedule:
🏃‍♀️ 11:00 a.m. | 1 km Run/Walk
🏃‍♀️ 11:45 a.m. | 5 km Run/Walk

🌎 Participate Virtually

Can’t join us in person? No problem! Join the challenge from wherever you are.

The challenge starts September 20 and officially runs through October 20, 2026.

Use the Big Team Challenge app to track your progress from anywhere. Connect your smart device or manually enter your daily steps as we work together toward our goal of 14,623,414 steps across Canada!

Many thanks to our Silver Sponsors:
Taysha Gene Therapies & Acadia Pharmaceuticals

08/21/2026

✨ It’s as easy as 1, 2, 3 to join the Run 4 Rett Coast to Coast Challenge! ✨

1️⃣ Register online
2️⃣ Track your steps
3️⃣ Start moving for Rett! 🏃‍♀️

👉 Join today and be part of something big!

08/17/2026

As we kick off a new school year, we’ve got resources ready for you:

✅ All About Me documents to help teachers and classmates get to know your child
✅ October Awareness activities to support Rett Syndrome Awareness Month
✅ Downloadable posters to share in your schools and communities

Visit our website today and get everything you need to start the year strong! 💜
👉https://rett.ca/october-awareness/

08/13/2026

📣A step forward for DAYBUE access in Canada!

We were pleased to learn that Acadia Pharmaceuticals Canada, the manufacturer of DAYBUE, has successfully secured an agreement with a major private insurer to have DAYBUE listed as an eligible treatment under some insurance plans.

This marks the first time that eligible patients in Canada can receive insured access to DAYBUE for Rett Syndrome.

As you likely know, private insurance plans are unique to each employer, so while some plans may provide coverage for DAYBUE, others may not. Access is based on eligibility and individual coverage.

Acadia provides support to navigate these insurance plans through their patient support program, Acadia Connect. Once enrolled in the program, the team can provide patients and caregivers with support to navigate potential coverage for DAYBUE under their specific plan.

We encourage all patients and caregivers interested in trying DAYBUE to speak with their physician to discuss enrolment in the program. For more information, visit https://acadiaconnect.ca/.

For those that are already enrolled in the program, you can expect to receive a call from the program in the coming weeks if your loved one is now eligible.

We are encouraged by this recent development and remain committed to advocating for broader coverage for DAYBUE, under both public and private insurance plans.

08/13/2026

Your Voice Matters: New Rett Syndrome Research Published

We are delighted to share the publication of “Understanding Caregivers’ Experiences of Rett Syndrome: A Multinational Study of Symptoms and Meaningful Outcomes of Potential Treatments” in Neurology and Therapy.

This multinational study included 323 caregivers, including 45 from Canada, exploring the symptoms that have the greatest impact on people with Rett syndrome and their families, and what caregivers consider meaningful improvements from potential future treatments.

A heartfelt thank you to everyone who shared their experiences and perspectives. Your voices are helping researchers better understand what matters most to families and what meaningful outcomes should look like.

ORSA Canada is proud to help connect Canadian caregivers with important research.

Read the full article here: https://rett.ca/publications/

08/13/2026

Get Repost App • Join us for OBI Public Talks “Beyond the Diagnosis: The Future of Neurodiversity”: a free, moderated panel on September 12!

💡 Learn how our scientific understanding into neurodevelopmental conditions has broadened to include diverse perspectives and motivated better treatments and supports.

🧠 Our featured speakers include Dr. Evdokia Anagnostou, MD, a child neurologist and internationally recognized leader in autism research, and Allison Chang, MSW, RSW, a doctoral researcher and parent advocate.

⏰ Saturday, September 12th at 2:00 PM ET
🗓️ In-Person and Online

🔗 Register today at braininstitute.ca/news-events/2026/future-of-neurodiversity

08/12/2026

Register now! Public Talk: “Beyond the Diagnosis: The Future of Neurodiversity” featuring Dr. Evdokia Anagnostou.

The Ontario Brain Institute works to establish Ontario as a world leader in brain research, commercialization and care.

08/10/2026

📣 LAST DAY TO ORDER MERCH 📣

✨We’re excited to bring you the official ORSA Canada Merch collection designed for our incredible Rett syndrome community, supporters, families, and advocates.

📅 Pre-orders open July 1 and close August 10.

📦 Pick up your order at the Run 4 Rett or have your order shipped!

Every purchase helps spread awareness, spark conversations, and show the strength of our Rett syndrome community.

These items make thoughtful gifts for family members, friends, caregivers, and the supporters who make a difference every day.

Mark your calendars and get ready to wear your support with pride!

📏 SIZING & PRICES
For detailed sizing charts for all apparel styles, visit:
👉 https://www.sanmarcanada.com/shop-catalogue/shop-by.html
Search using the item codes below for exact measurements.

Premium Black Zip Hoodie – ATCF2600
Adult Only (S-3XL): $25.00
• Soft cotton blend
• Full zipper
• Premium quality and comfort

Basic Pullover Hoodies – ATC F2500 & ATC Y2500
Adult Sizes (S–3XL): $20.00
Youth Sizes (S–XL): $15.00
• Sky Blue or Purple
• Soft cotton
• Front pocket
• Everyday comfort

T-Shirts – ATC S350 & ATC Y350
Adult Sizes (XS–3XL): $10
Youth Sizes (XS–XL): $10
• Black, Sky Blue or Purple
• Softstyle Lightweight
• Soft cotton

Order Here
👉https://www.canadahelps.org/en/charities/ontario-rett-syndrome-association/events/official-orsa-canada-merch/