I hope you are all doing well, staying positive and testing negative as we journey through this winter season.
Events of this year have continued to place pressure on all of us to lead a balance life during uncertain times. I am truly inspired by the unwavering resilience of our community to push forward despite the many challenges that we face.
Your energy radiates and motivates everyone at the Ontario Rett Syndrome Association (O.R.S.A.) to continue to serve our community with dedication and pride. We are here to help you: providing support, valuable information, and resources.
As we look forward with optimism for better tomorrows, we would like to express our sincere appreciation for your continued trust in us.
Since my move into the President’s role last August, I am increasingly comfortable and confident with our goals.
O.R.S.A.’s past president, Kevin Morton, spent the last year working with me to make sure we could provide a seamless transition of leadership of our organization. Kevin continues as a mentor and friend, and for this support I am truly grateful.
Likewise, I would like to take this opportunity to thank our Board of Directors, (Bryan, Sherry, Joan, Keri-Ann, Steve, Jodi, Cindy, Melanie, and Nikki) for all their hard work and commitment. I am fortunate to be working alongside a wonderful team who volunteer their time to ensure the continuation of O.R.S.A.’s legacy through 30 successful years.
The efforts and accomplishments achieved by our working board are proudly demonstrated below. I encourage everyone to take a moment to review the highlights and see how we have collectively made progress toward our strategic priorities.
Wishing you and your families much love, joy and peace this holiday season.
All the best in 2022!
O.R.S.A. Turns 30
This milestone was celebrated by surprising 30 long time O.R.S.A. supporters with our new Hope Box. We appreciate your contributions to help make O.R.S.A. a place where families feel supported. To find more interesting facts about the last 30 years click here:
New Board Members
A warm welcome to our newest Board members: Cindy Belland-Steele, Melanie Birch, and Nikki Arapov. We look forward to working with you.
The Hope Fund at Work
Congratulations to our 2000-2021 Hope Fund recipients, Dr. Rastegar and Dr. Weber. We wish you much success with your research.
We are now accepting research grant applications for 2022-2023 until February 15, 2022. This funding opportunity will be offered in the amount of $100,000 (two grants of $50,000 or one grant of $100,000) per year for a period of one year. These funds have been made possible by the generous support of our members, families and friends. Over $600,000 dollars have been awarded to Canadian Researchers who want to advance science for Rett syndrome. If you would like to contribute to The Hope Fund and see your dollars at work, visit our website. Donations over $20.00 dollars will receive a tax receipt.
Canadian Rett Syndrome Registry
This year the Canadian Rett Syndrome Registry provided valuable data in helping with clinical trial research. If you are interested in contributing to science we encourage you to register your loved one’s information into the Canadian Rett Syndrome Registry.
Neurological Health Charities Canada (NHCC)
In collaboration with the, NHCC, a National Brain Strategy was created and presented to Parliament addressing equality and government assistance.
Tashya Gene Therapies
The Canadian Rett Syndrome registry helped Tashya Gene Therapies develop a caregiver survey regarding symptoms management. Canadian families were then offered an opportunity to participate in this survey by providing their loved one’s information. This information will help shape the goals of their upcoming gene therapy protocol.
Anavex Life Sciences
O.R.S.A. was asked to help facilitate and recruit patients into Canada’s first clinical trial for Rett syndrome. All 3 Canadian sites should be up and running by next year.
This exciting new partnership will open many doors to help us with clinical trial support and management.
Acadian Pharmaceuticals recently announced positive top line results in their Phase 3 clinical trial of Trofinitide for treating symptoms of Rett syndrome.
Gaining access to novel therapies in Canada is a priority to us. Stay tuned for more information.
Your Voice Matters
Thank you to everyone who participated in our 2021 Rett clinic satisfaction survey. It was reassuring to see that overall families are happy with the service provided by the clinics. We appreciate your feedback as we look for ways to improve the family/patient experience.
O.R.S.A. took the initiative to have podcasts created in 2021. Dr. Kerry Delaney, Dr. Alexander Weber, Dr. Mojgan Rastegar, Dr. Juan Ausio, Dr. John Vincent, Dr. James Eubanks and Past O.R.S.A. Presidents.
Each one represents a unique connection to the O.R.S.A. community. The importance of O.R.S.A. and the special individuals they support is prevalent in each podcast.
All the podcasts are archived on the O.R.S.A. website and can be found on Apple Podcasts, Google Podcasts and Spotify.
The 2021 RUN4RETT took place during the entire month of October. Teaming up with the awareness month for Rett syndrome. Once again this year the signature event was held 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 Running Room website was once again selected to register and make donations for the event. O.R.S.A. cannot thank all of the participants and those that donated enough. Thank you for believing we make a difference with every participant, registration and donation made.
Thank you to the Swartz and Dodds families. Your support and generous donations of silent auction items every year has been unwavering. Almost since the very beginning of the signature event, O.R.S.A. has been able to count on you. Together you are making a difference to those affected with Rett syndrome and their families. This year we had a little extra help from the Swartz extended family. Tyler Polon, a high school student volunteered to assist O.R.S.A. with photos of the auction items. A win- win situation, thank you Tyler.
The success of the 2021 virtual event and auction speaks volumes of the support from the families and friends of O.R.S.A.
The total combined money raised was just over $30,000!!!
Thank you to all those that participated, registered, donated and bid.
Together we are making a difference and made the 2021 RUN4RETT a success!
Uncorked Rett 2021
For our second year in a row – Ontario Rett Syndrome Association has teamed up with Fielding Estate Winery with a hand selected packages great for the holidays. When you purchase any of the wine packages available, 25% will be donated back to Ontario Rett Syndrome Association. Delivery will be included throughout Ontario, but for other Provinces and Territories, accommodations can be made through Fielding Estate Winery.
Packages are still available to be ordered:
The Rett Classic was once again cancelled due to COVID-19. We hope to be up and running again in 2022. Stay tuned for more details!
3rd Party Fundraisers
Thank you to everyone who organized their own fundraisers this year!
In 2021 the event raised $7099.30 for O.R.S.A.
This bootcamp fundraiser in Thunder Bay raised an amazing $21,925 for The Hope Fund.
This event was cancelled this year due to COVID-19 but still raised $1,818. Thank you for your support over the years!
Host Your Own Fundraiser
Did you know that you could host your own 3rd party fundraiser in support of O.R.S.A.? We currently have several that run annually, scheduled at different times throughout the year! All you have to do is present your fundraiser to O.R.S.A., and we will let you know if it fits within our criteria. If it does, then we will assist you with guidance and providing you with pamphlets and brochures to hand out on the day of your event. Any fundraising done in support of O.R.S.A. can be directed to our general operating fund which support the clinics and other initiatives or to The Hope Fund for research grants.
Thanks to everyone who took the time to contact us over the past year. It’s always a pleasure getting to know new people and keeping in touch.
Some of the clinics have started in person appointments, however due to COVID, you can still connect by phone and virtual appointments. Visit Rett.ca – Clinics for more information.
We were happy to participate in the New Hope box, delivered to new members upon request. The package has amazing information as well as some goodies for everyone.
Another way to keep in touch is by becoming a free lifetime member. Some of the benefits of a membership include:
- Automatic subscription to our emails
- preferred rates for conferences and workshops
- receiving up to date information on research and treatments for Rett syndrome
- new members that are caregivers receive a package that contains valuable resources
- support at the local level including clinics, workshops, and fundraisers
- networking with families and researchers with a wealth of information
A strong membership allows O.R.S.A. to continue to be a strong advocate and voice for all individuals, families, and friends affected by Rett Syndrome.
I look forward to the day we can meet face to face again, hopefully in 2022.
Keri Ann Richard, O.R.S.A. Family Outreach Coordinator
Rett Syndrome Awareness Month
This past October during RETT Syndrome Awareness Month, not only did small and large communities come together during the pandemic, but Canada came together. Over the past 4 years O.R.S.A. has been working hard on member’s behalf to have their communities recognize and proclaim October as RETT Syndrome Awareness Month.
In addition to having proclamations issued as part of our awareness campaign, we continue to work hard to light Canada and the world purple on October 29th for Rett Syndrome. When we first started our purple light campaign several years ago, we only had a few major locations lit purple. Even with the pandemic, this year Canadian Rett organizations joined together to try to #LightCanadaPurple. We would like to thank British Columbia, Alberta, Saskatchewan, and Manitoba’s Rett Syndrome Societies for joining us in this year’s campaign. In Ontario, we had over 15 communities light up one or more locations purple on October 29th to show their support. We would like to thank all that participated and shared their photos with us.
Please consider making a donation to O.R.S.A. so that we may continue our mission in 2022 and beyond.
All donations over $20 received before midnight on December 31, 2021 will be issued a tax receipt for 2021.