Last Updated: 06/16/2023 by Steve
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!
Last Updated: 02/16/2024 by admin
CANADIAN RETT SYNDROME REGISTRY
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:
New Options Available:
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.
Taysha Rett Community Letter
Last Updated: 07/26/2023 by Steve
Taysha-Rett-Community-Letter-FEB-1-2023
2022 Year in Review
Last Updated: 06/06/2023 by Steve
2022 Run4Rett
Last Updated: 06/16/2023 by Steve
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
Last Updated: 06/06/2023 by Steve
You can support O.R.S.A. by purchasing the items you already need or want. Here’s how:
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
Last Updated: 07/26/2023 by Steve
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
Last Updated: 11/15/2022 by Steve
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.
2022 Run4Rett Family Shares
Last Updated: 01/16/2023 by Steve
2022 Uncorked Rett
Last Updated: 01/16/2023 by Steve
Taysha Community Update
Last Updated: 10/31/2022 by admin