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

18th Annual Rett Classic – Sunday June 11, 2023

We are excited to announce the date for our

18th Annual Rett Classic

Join us for golf, dinner, & friendship in support of O.R.S.A.
Sunday, June 11, 2023 at our NEW location in
Flamborough, ON.

Register Today!



Dear National Registry Users,

We are thrilled to announce that the Canadian Rett Syndrome National Registry recently underwent a temporary offline period for a significant upgrade aimed at securing your data and providing enhanced customization options to better serve your needs. This upgrade comes just in time for our 10-year anniversary, marking a decade of commitment to excellence.

Key Enhancements:

  1. Security Upgrade: Your data security is our top priority. The recent upgrade includes robust measures to ensure the utmost protection of your information.
    Customization Options: We now offer tailored options to provide you with a more personalized and efficient experience within the National Registry.
    10-Year Anniversary Celebration: As we celebrate a decade of service, we want to express our gratitude for your continued trust and support in O.R.S.A.

New Options Available:

  • Comprehensive Registry: Explore the upgraded and comprehensive registry that allows you to provide your loved one's information to strengthen knowledge about Rett Syndrome in Canada. 
    Clinical Trials and Drug Access Registry: Tailor your experience in providing your contact information for upcoming opportunities withing Canada for Rett Syndrome.

We appreciate your patience during the temporary downtime and hope you enjoy the enhanced features.

Thank you for being a valued part of the Canadian Rett Syndrome National Registry community.

2022 Run4Rett

The month of October encompassed Rett syndrome awareness and the 2022 RUN4RETT virtually.  Families and friends could participate in their own backyard. Connected together with the unbreakable spirit of all our loved ones with Rett syndrome. 

The event registration, for over 10 years, has been found at the Running Room site.  Thank you for believing we can make a difference, with every participant, registration and donation made. 

Thank you to the Swartz and Dodds families. Your support and generous donations of auction items every year has been unwavering. O.R.S.A. has been able to count on you since the beginning.  Once again we had a student volunteer assisting with the auction photos.  Thank you Tyler Polon. 

Together you are making a difference to those affected with Rett syndrome and their families.  

The success of the 2022 virtual event and silent auction speaks volumes of the support from the families and friends of O.R.S.A.  The total combined money raised was just over $39,000.   Thank you to all those that participated, registered, donated and bid.  Together we are making a difference. 

Mark your calendars, September 24th, 2023 at a new location, the Richvale CC at 160 Avenue Road, Richmond Hill, Ontario, see you there! 

Support O.R.S.A. by using FlipGive

You can support O.R.S.A. by purchasing the items you already need or want. Here’s how:

  • Join Our Team – Search for Ontario Rett Syndrome Association and join our team or click on the link below to be taken directly to the site.
  • Shop Online – Teams earn cash back on things they already need. Get paid whenever you shop online with hundreds of popular brands.
  • Find Places Nearby – Buy gift cards that earn cash back to redeem at restaurants and in-store. Our app helps you find participating brands near you.
  • Get Perks – Earn bonus cash with contests and promotions throughout the year. And, enjoy special offers from brands, exclusively for FlipGive teams.

Join our team now using our invite code SP69V5 in one of 2 ways:

1. Download the FlipGive app at Click Here and enter team code: SP69V5

2. Join online Click Here

Taysha Gene Therapies Update

An Investigational Approach to Gene Therapy for Rett Syndrome

November 2022 Community Update

Taysha Gene Therapies is pleased to share this presentation to provide an overview of its investigational gene therapy approach to Rett syndrome and the first gene therapy clinical trial in females living with Rett syndrome—the REVEAL Adult Study. Taysha would like to thank the entire Rett community for their collaboration and support. For more information, please visit clinicaltrials.gov or email medinfo@tayshagtx.com.

Remembrance Day

On this Remembrance Day, on behalf of the board of directors at O.R.S.A., we honour all the fallen service members, and to all those who continue to serve, we remember you. We are thankful for the freedoms we have because of their sacrifice.

Click on our digital poppy below.