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
2020 Conference
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.
Fundraising
Run4Rett 2020
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.
Ref4Rett
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.
Family Outreach
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.
I look forward to the day we can meet face to face again. Planning for 2022 education conference if all goes well.
Keri Ann Richard, O.R.S.A. Family Outreach Coordinator
Member Mask Giveaway
Two free O.R.S.A. branded face masks are available for all members. Sign up for a membership today to receive yours. If you are an existing member, you can order the masks using this form:
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.
Donate Now
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.
Over the next several weeks, O.R.S.A. will be presenting our 2020 award winners. Typically our awards are given out during our bi-annual conferences, but we weren’t able to hold an in person event this year.
The Spirit Award is given in recognition of a significant contribution in raising awareness for Rett syndrome, through a combination of years served as a member, fundraiser and generous supporter.
The first Spirit Award for 2020 is presented to Mark Swartz. Mark is a long-time donor to Run4Rett. He has contributed most of the auction items, including the popular and unique sports memorabilia. Due to COVID-19, this year’s run was held virtually. Mark once again donated all the items and he offered his advice and assistance towards the success of a virtual auction that was run throughout October awareness month.
Thank you Mark for your ongoing generous support to O.R.S.A.!
Pictured below is board secretary and Run4Rett race director Sherry Lawrence presenting the Spirit Award to Mark with his niece Alyssa.
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 in 2021. This is a great opportunity to start the new year off right: helping to achieve a better future for individuals affected by Rett syndrome and their families.
We are particularly interested in hearing from individuals whose experience and skill set includes a combination of the following:
Grant writing
Fundraising and special events
Health policy development
Public relations and communications
Advocacy on a provincial/federal level
Nonprofit, governance, management or administration experience
Application Deadline is December 31, 2020
Board Member Expectations:
Support the organization’s mission, purpose, goals, policies, and programs while knowing its strengths and needs.
Attend bi-monthly board meetings (via teleconference) and one or two in-person meetings throughout the year.
Prepare for and participate actively in conference calls, telephone and email communications between these meetings as necessary.
Serve actively on committees.
Contribute to activities and events hosted by the organization whenever possible.
Be fully apprised of O.R.S.A. policies and positions to serve as a spokesperson when requested and feasible.
Suggest volunteers the board who have attributes and commitment to make significant contributions to the work of the O.R.S.A. and the progress of the organization.
The Program offers grants for the support of projects with amounts of up to $50,000 (two grants of $25,000 or one grant of $50,000) per year for a period of one year. Funds cannot be used to cover tuition costs.
Through this process, ORSA invites grant applications from professionals committed to conducting novel, emerging, or innovative research in areas relevant to the cure, cause, prevention, improved treatment and/or understanding of Rett syndrome and its implications on society. This program is provided to support current investigators and encourage new investigators to pursue research in Rett syndrome.
ORSA intends to provide awards to outstanding applicants who meet the eligibility criteria of the Program and who have been approved by its Research Grant Advisory Committee (the “Advisory Committee”). Further support is possible to existing funded projects by offering the option to renew funding upon the successful applicant’s re-application to the program.
While GW Pharmaceuticals did not have any active sites or Canadian patients, the Ontario Rett Syndrome Assocation (O.R.S.A.) was actively supporting them to establish a Canadian location. While this news is disappointing, it is understandable given the current COIVD-19 implications across the world. O.R.S.A. remains committed to bringing Rett syndrome Clinical Trials to Canada to ensure that individuals with Rett syndrome are enabled to achieve their fullest potential and enjoy the highest quality of life within their community.
Last Updated: 12/31/2020 by Bryan Higgins
2020 Year In Review
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
2020 Conference
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.
Fundraising
Run4Rett 2020
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.
Ref4Rett
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.
Family Outreach
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.
Become a Member Today
I look forward to the day we can meet face to face again. Planning for 2022 education conference if all goes well.
Keri Ann Richard, O.R.S.A. Family Outreach Coordinator
Member Mask Giveaway
Two free O.R.S.A. branded face masks are available for all members. Sign up for a membership today to receive yours. If you are an existing member, you can order the masks using this form:
Mask Order Form
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 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.
Donate Now
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.
Donate Now
Posted: 12/11/2020 by Bryan Higgins
2020 Spirit Award: Mark Swartz
Over the next several weeks, O.R.S.A. will be presenting our 2020 award winners. Typically our awards are given out during our bi-annual conferences, but we weren’t able to hold an in person event this year.
The Spirit Award is given in recognition of a significant contribution in raising awareness for Rett syndrome, through a combination of years served as a member, fundraiser and generous supporter.
The first Spirit Award for 2020 is presented to Mark Swartz. Mark is a long-time donor to Run4Rett. He has contributed most of the auction items, including the popular and unique sports memorabilia. Due to COVID-19, this year’s run was held virtually. Mark once again donated all the items and he offered his advice and assistance towards the success of a virtual auction that was run throughout October awareness month.
Thank you Mark for your ongoing generous support to O.R.S.A.!
Pictured below is board secretary and Run4Rett race director Sherry Lawrence presenting the Spirit Award to Mark with his niece Alyssa.
Last Updated: 12/31/2020 by Bryan Higgins
Application for 2021 Board of Directors Now Open
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 in 2021. This is a great opportunity to start the new year off right: helping to achieve a better future for individuals affected by Rett syndrome and their families.
We are particularly interested in hearing from individuals whose experience and skill set includes a combination of the following:
Application Deadline is December 31, 2020
Board Member Expectations:
Please submit your application to kmorton@rett.ca.
Research Grant Application Program 2021-2022
Last Updated: 11/28/2020 by Bryan Higgins
The Program offers grants for the support of projects with amounts of up to $50,000 (two grants of $25,000 or one grant of $50,000) per year for a period of one year. Funds cannot be used to cover tuition costs.
Through this process, ORSA invites grant applications from professionals committed to conducting novel, emerging, or innovative research in areas relevant to the cure, cause, prevention, improved treatment and/or understanding of Rett syndrome and its implications on society. This program is provided to support current investigators and encourage new investigators to pursue research in Rett syndrome.
ORSA intends to provide awards to outstanding applicants who meet the eligibility criteria of the Program and who have been approved by its Research Grant Advisory Committee (the “Advisory Committee”). Further support is possible to existing funded projects by offering the option to renew funding upon the successful applicant’s re-application to the program.
Request for Applications for the Research Grant Program
Letter of Intent Form
Should you have any inquiries, please contact:
Rick Goodhew
O.R.S.A. Advisory Committee
Ontario Rett Syndrome Association
goodhew@rogers.com
ARCH Study Update
Last Updated: 12/31/2020 by Steve
While GW Pharmaceuticals did not have any active sites or Canadian patients, the Ontario Rett Syndrome Assocation (O.R.S.A.) was actively supporting them to establish a Canadian location. While this news is disappointing, it is understandable given the current COIVD-19 implications across the world. O.R.S.A. remains committed to bringing Rett syndrome Clinical Trials to Canada to ensure that individuals with Rett syndrome are enabled to achieve their fullest potential and enjoy the highest quality of life within their community.