The Ontario Rett Syndrome Assocation (O.R.S.A.) wishes to invite interested candidates to submit their application to join the O.R.S.A. Board of Directors. This is a great opportunity to help achieve a better future for individuals with Rett syndrome and their families.
We are particularly interested in hearing from individuals whose experience and skill set includes a combination of the following:
Health policy development
Public relations and communications
Advocacy on a provincial/federal level
Nonprofit, governance, management or administration experience
Board Member Expectations:
Support the organization’s mission, purpose, goals and policies by volunteering your time.
Attend monthly board meetings (currently run remotely by zoom).
Serve actively on committees.
Contribute to activities and events hosted by the organization.
On March 5th, Ontario released more details on who would be eligible for vaccination under phase 2, beginning in April. This includes individuals with high risk chronic conditions and their caregivers. Adult chronic home care recipients are already eligible under phase 1.
It is likely all adults with Rett syndrome would be eligible to receive a vaccine in phase 2 under one of these categories:
Highest risk – People with neurological diseases in which respiratory function is compromised.
High risk – Intellectual or developmental disabilities.
If an individual falls into the highest risk category, one primary caregiver is also eligible under phase 2.
It is advisable to discuss your personal vaccination plans with your primary care provider. The Rett syndrome clinics have no additional details on vaccine rollout.
O.R.S.A. will continue to provide updates as they become available.
Update March 23: Primary essential caregivers are included for individuals in the High-Risk Health Conditions group who require regular and sustained assistance with personal care and/or activities of daily living.
Update April 2: We are hearing reports that vaccine clinics in Toronto have administered vaccines to individuals with high and highest risk medical conditions and one caregiver. For those who have upcoming appointments at SickKids, it may be possible to register for vaccination with University Health Network even if you don’t live in the catchment area.
DON’T WORRY IF YOU MISSED OUR UNCORKED 2020 PACKAGES
We have continued to teamed up with Fielding Estate Winery, in Beamsville, Ontario to offer you some great wine packages. 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.
Interested in making your own package or live outside of Ontario, accommodations can be made through Fielding Estate Winery. (Please call 1.888.778.7758and reference our Rett fundraiser.)
With your help and generous support, we will be able to continue to provide conferences, fund Canadian research projects, financial support three Rett Syndrome Clinics, and the Canadian Rett Syndrome Registry.
When you click on the package you will be redirected to Fielding Estate Winery website to purchase your package. If you wish to order other items they carry or for all orders outside of Ontario the wine lodge is happy to assist you. Please call 1.888.778.7758and reference our Rett fundraiser. Thank you for support.
While a global pandemic has had significant impacts on the level of care that many of our loved ones with Rett syndrome have been able to receive, the Ontario Rett Syndrome Association (O.R.S.A.) is continuing to move forward with our support. Our mission is to ensure that children and adults with Rett syndrome are enabled to achieve their full potential and enjoy the highest quality of life within their community.
We were fortunate enough to have been in a strong financial position and have been able to overcome the pandemic impact without any government support or funding to-date. With the support of our amazing board of directors, O.R.S.A. transitioned to a virtual Run4Rett, moved to virtual board meetings and have continued to support our clinics and The Hope Fund.
We are continuing to work with our clinics and some pharmaceutical companies in hopes of bringing the first Rett syndrome clinical trial to Canada in 2021.
We wish everyone a very safe and happy holiday season and look forward to 2021.
Thank you for continued support.
Kevin Morton, O.R.S.A. President
Our 2020 Vision for Tomorrow didn’t include a global pandemic; however, skills were still acquired teaching us resiliency and adaptability. With the finalized conference only months away, COVID presented us with a different agenda. Our education committee quickly regrouped and transitioned our face-to-face sessions to a virtual platform. Proudly, we were still able to continue the momentum and provide four amazing webinars with the support of our medical professionals. If you missed out on these informative presentations you can find them on our website or the links below:
Becoming a Friend to Yourself: How Self-Compassion Can Help Caregivers
O.R.S.A. Research Update July 2020
Ontario Rett Medical Panel
The Hope Fund at Work
We are now accepting research grant applications for 2021-2022 until February 15, 2021.
This funding opportunity will be offered in the amount of $50,000 (two grants of $25,000 or one grant of $50,000) 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 $500,000 dollars have been awarded to Canadian Researchers who want to advance science in 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.
The 2020 Run4Rett took place during Rett syndrome Awareness Month in October. Due to COVID, O.R.S.A. was challenged with the task of reinventing the signature event. Race directors David and Sherry Lawrence, supported by the O.R.S.A. board, decided to take the run into the virtual world. Creating a one of a kind race, uniting in your own backyard, everyone was connected together with the unbreakable spirit of all our loved ones with Rett syndrome.
A virtual silent auction also took place from October 29th to November 12th, offering some amazing items to bid on. This was also a unique opportunity to reach more participants and educate a larger audience about Rett syndrome.
The success of the virtual 2020 race 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 $38,000.
Thank you to all those that registered, donated and bid. Together we are making a difference and made the 2020 Run4Rett a success!
Uncorked Rett 2020
In November, we introduced Uncorked Rett 2020, our first wine fundraiser. We teamed up with Fielding Estate Winery in Beamsville Ontario. They created two wine packages for us and 25% of the proceeds will go towards supporting O.R.S.A.. They are adding our Uncorked Rett logo to every bottle sold.
As of December 18th, Fielding Estate Winery reported $7,523 in RETT package sales!
The wine packages will still be available until January 15th, 2021. We would like to thank everyone that had purchased a wine package or are planning to order.
The 2019-2020 Ref4Rett was another success raising over $32,600 for The Hope Fund with our 8th Annual event. This money is going to be used to support Canadians with Rett syndrome participating in any upcoming Canadian clinical trials. Unfortunately, due to COVID, the 9th Annual event has been postponed.
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.
By the generous donation from Helen Siciliano (Ella’s aunt) and Penny Hayes (Feathering Quilt Shop), Ella’s annual Quilt Raffle raised $1640.00 for O.R.S.A. The lucky winner was Ella’s principal, Mike Mielko.
First, I’d like to thank 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.
Although the clinics have reduced face to face appointments due to COVID, you can still connect by phone and virtual appointments. Visit Rett.ca – Clinics for more information.
Another way to keep in touch is by becoming a lifetime member. Members are automatically subscribed to our emails and will receive a welcome package by mail.
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 3 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 2018 we had 3 proclamations issued, but in 2020 we have increased the number of communities issuing proclamations to 26 in Ontario. There were several proclamations also issued on both the East and West coasts this year.
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 2021 and beyond.
All donations over $20 received before midnight on December 31, 2020 will be issued a tax receipt for 2020.