P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

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We would love to see your photos of iconic locations or local supporters that were lit purple for Rett Syndrome. 

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DAYBUE – Breaking News

Approves

Acadia Pharmaceuticals Announces

Health Canada Approval of DAYBUE (trofinetide) for the Treatment of Rett Syndrome.

 
DAYBUE is the first and only therapy approved in Canada for the treatment of Rett syndrome, a rare neurodevelopmental disorder. We recognize the incredible sacrifices made by individuals with Rett syndrome and their families who participated in the clinical trials. Thanks to their courage, along with the dedication and perseverance of Acadia Pharmaceuticals, we have reached a pivotal milestone for Canadian families. We are grateful to everyone involved in making this treatment a reality today.
 

2023-24 AGM Committee Reports

Annual General Meeting 

Highlights from Committee Reports  
August 2023-Sept 2024 

 

Communications 

    • New and improved website to be released to ORSA community members in the near future – currently finalizing 
    • Improved use of social media and e-blasts to members 
    • Successful representation nationally for Rett Awareness Month in October with #LightCanadaPurple 
    • Positive feedback from families about the new awareness kit activities 
    • Annual calendar with artwork from ORSA community members in 2023 was a huge success, and in 2024 we are finalizing the next calendar to be released 
    • Applications are in place to implement future video campaigns 

Fundraising 

The following fundrasiers were held: 

ORSA Signature Events: 

  • Run4Rett 2023  
  • Annual ORSA Calendar 2023 
  • 19th Annual Rett Classic 2024 

 

3rd Party Events: 

        • Ref4Rett – hosted by the Morton family  
        • Revs4Rett August 2023 – hosted annually by the Millson family  
        • “36 Exposures” October 2023 – hosted annually by Michelle Quance  
        • AdBands May 2024 – hosted annually by Michelle Quance 

 

Upcoming ORSA events: 

    • Run4Rett 2024 taking place in-person on Sunday, September 22nd, 2024 at the Richvale Community Center, Richmond Hill   
    • 20th Annual Rett Classic is tentatively scheduled for Sunday, June 8th, 2025  

 

Education 

In May, FLASH (Family Literacy and AAC on the Shores of Huron) Camp was held in Southwestern Ontario at the fully accessible Camp Kintail. Four dynamic professionals spearheaded and planned the camp, teaching literacy and communication skills to individuals who use augmentative and alternative communication (AAC), alongside their families and support workers. O.R.S.A. provided funds again for the 2nd year, administration support to process grants and camper fees, as well as liaison & planning time from one of our Board members. The Camp is booked to run again in 2025, stay tuned for details. 

 

A caregiver conference, “Stronger Together”, was held in Ottawa, October 21-22, 2023 sponsored by Taysha Gene Therapies, Acadia Pharmaceuticals, and Anavex life sciences. It was a wonderful opportunity for families to gather, learn and talk to medical professionals and industry leaders. 

 

Ongoing Activities: 

 

Resources, education material and tools can be found on the O.R.S.A. website. The website is a working document and is routinely being refreshed and updated.  

 

Scientific 

Over the past year we were able to  

      • Attend IRSF scientific conference and Ascend caregiver conference 
      • Assisted Anavex Life Sciences with patient advocacy 
      • Worked with Acadia Pharmaceuticals to assist with providing information on gaining access to Daybue in Canada.  
      • Submitted a CADTH application on behalf of all Canadian Associations 
      • Updated security measures and access to the Canadian Rett Syndrome Registry 
      • Assist Taysha Gene Therapies with activating a pediatric gene therapy program in Montreal 
      • From the research hope fund, we issued 2 large grants totaling 100, 000 to Canadian researchers Dr. Wright Dr. LeRouex and Dr. Rossignol 

 

Outreach 

      • Appointed a new outreach coordinator, Amy Whittard 
      • Continued to contact new families when they sign up for lifetime membership   
      • Answered approx. 20-28 emails as well as voice mails related to new family’s reaching out for information, and follow-up questions to existing ORSA members  

 

2025 Calendars

Order your Copy Today!

We are beyond excited to share the 2025 O.R.S.A. Calendar, where art, resilience, and community come together form coast to coast in the most beautiful way! Created by individuals with Rett syndrome and their amazing families, this calendar is more than just a visual treat—it’s a celebration of hope, strength, and the incredible journey we’re all on together.

We are also please to announce this year’s calendar sponsor Acadia Pharmaceuticals Canada Inc.

Order Options

Run4Rett Pick-Up

As we always love to see you in person, we will be offering to hand deliver your calendar in person at the Run4Rett.

Sunday, September 22nd, 2024

RICHVALE COMMUNITY CENTRE, 160 Avenue Road, Richmond Hill, ON

We will be available from 10:30am – 12:30pm 

Delivery

If you are unable to pick up we would be happy to mail them to your address.

To avoid bending we ask you don’t use a P.O. Box.

Deliveries will start to ship in October 2024

 

Code of Conduct

Priority Review by Health Canada

Just announced at the 2024 Ascend Rett National Conference, Health Canada has accepted regulatory applications from Acadia Pharmaceuticals for DayBue (Trofinetide), but has also been accepted for a priority review by Health Canada.

We were honored to be mentioned by Acadia Pharmaceuticals.

See the video below.