You’re invited to the virtual Run4Rett, taking place from October 1st to October 31st, 2021.
October is Rett Awareness month, what better way to raise awareness!
Run by yourself or with friends and family – you can run whenever, wherever – run on a treadmill, around your neighbourhood or any course of your choosing. This is an opportunity to unite via social media with other families and friends supporting the same cause. Again this year we unite in our own backyard instead of Richmond Hill. You will have your own finish line, but you won’t be alone! You will be connected together with the unbreakable spirit of all our loved ones with Rett syndrome.
You can set up a fundraising page through your Running Room account, after you have registered for the Run.
The 17th annual 1k and 5k walk / run is a signature fundraiser for the Ontario Rett Syndrome Association (O.R.S.A.).
All proceeds fund crucial activities organized by O.R.S.A.’s volunteer board of directors. These include:
Funding of 3 Rett syndrome clinics in Ontario
The Hope Fund which provides grants to Canadian researchers
Bi-annual family conference and medical symposium
The Canadian Rett Syndrome Registry
Please JOIN US! Walk or run for the 1K or 5K with your social circle! Share your pictures with us to be featured on social media.
This year we are expanding our October Awareness Campaign with reusable lawn signs.
These signs are available free of charge to O.R.S.A. members, friends, and family who are interested.
Lawn signs are available on a first come first serve basis. As the number of signs are limited, you may order up to 5 per address for you and family and friends.
Help us spread awareness and build our social feed. Take a photo and #ORSASTRONG and tag Ontario Rett Syndrome Association.
We have currently reached our stock limit for this year. Thank you to everyone that will be participating.
The Ontario Rett Syndrome Association (O.R.S.A.) was incorporated on July 26, 1991. Launched from a small group of parents, the organization has grown tremendously over the past 30 years. O.R.S.A. funds 3 Rett syndrome clinics, has awarded over $600,000 in research grants, organizes educational events, runs the Canadian Rett Syndrome Registry and provides resources for families.
To celebrate this milestone, we have launched two podcasts!
Listening To Hope celebrates recipients of grants from The Hope Fund. The first two episodes are available now. We will be releasing a new episode each Monday for the next 4 weeks.
Fact #1: Our 2021 grants have been awarded! O.R.S.A. has distributed over $600,000 in research grants from The Hope Fund to date. Our grants enable projects that would not otherwise get funding to move forward.https://t.co/nE2mC5FbQppic.twitter.com/F7knEhs2Dc
Fact #2: Gene Valeriote was O.R.S.A.'s first president. He served from 1991 – 2002. During his watch O.R.S.A. established itself as an invaluable resource for families in Ontario, launching a newsletter, memberships and educational conferences. pic.twitter.com/D2JgbifmfW
Fact #3: O.R.S.A.'s president from 2002 – 2010 was Gregg Bereznick. During this period, O.R.S.A. launched a website and established 3 clinics: CHEO, Toronto Western Hospital and Thames Valley. pic.twitter.com/KvfeEKKEZg
Fact #4: Terry Boyd was O.R.S.A.'s president from 2010 – 2016. Terry was instrumental in founding the clinc at CHEO, creating the Canadian Rett Syndrome Registry and launching the Hope Fund. She was awarded the Sovereign's Medal for Volunteers by the Governor General. pic.twitter.com/WzHPjhMRBe
Fact #5: Our president since 2016 is Kevin Morton. Kevin launched the Ref4Rett fundraiser with his wife Lory which has raised over $250,000. He has steered the organization through the challenging pandemic period. pic.twitter.com/N3goRlj93L
Fact #6: Our biggest fundraiser each year is Run4Rett. It is also a chance to catch up with other families and friends. We will be running a virtual race again this year but hope to be back in 2022! pic.twitter.com/wbd8c5ll31
Fact #7: O.R.S.A. is proud to partner with the International Rett Syndrome Foundation. We collaborate with I.R.S.F. on issues that impact individuals with Rett syndrome globally. pic.twitter.com/GnDQm4FlnV
Fact #9: Our first ever research grant was awarded in 2010 to Dr. John J. Greer at the University of Alberta. Dr. Greer studied respiratory disfunction in MECP2 deficient mice. You can read the results of his study here:
Fact #10: O.R.S.A. is here to support all individuals with Rett syndrome, including boys and men. We have a dedicated page on our website for information on Rett syndrome in males.https://t.co/BGvwtGKSWbpic.twitter.com/OxBugyrtv2
Fact #11: Uncorked Rett is our new, pandemic inspired, signature fundraising event. We teamed up with Fielding Estate Winery in Beamsville to offer great wine packages shipped to your door. Uncorked Rett will be back in time for the holiday season later this year! pic.twitter.com/MqkfNehG7v
Fact #13: O.R.S.A. is part of the Province of Ontario Neurodevelopmental (POND) Network: A research network striving to understand the biology underpinning neurodevelopmental disorders. We represent the Rett syndrome community at the patient advisory committee. pic.twitter.com/ravaPf6jzA
Fact #14: As a registered Canadian charity, O.R.S.A. is fully transparent. You can find our audited financial statements from the past 10 years on our website.https://t.co/zCp1DAjtT3pic.twitter.com/QZX4QJMkTM
Fact #15: Each year our communications committee organizes proclamations for Rett Syndrome Awareness month. We aim to have all of the towns and cities of our members represented. pic.twitter.com/HL6x8lPClX
Fact #17: A diagnosis of Rett syndrome can be devastating news. O.R.S.A. is here to help. Our family outreach coordinator Keri Ann is available to connect newly diagnosed families with the resources and connections they need. pic.twitter.com/0QxTTypOza
Fact #18: We are grateful for the 3rd party fundraising events that donate proceeds to O.R.S.A. each year. If you are thinking of hosting an event, our fundraising committee can help. pic.twitter.com/HiFuvcnae2
Fact #19: In 2010, with support from Dr. Victoria Siu, a Rett syndrome clinic was established at Thames Valley Children’s Centre (TVCC) in London. O.R.S.A. provides ongoing support to the clinic which provides a multidisciplinary team for care coordination. pic.twitter.com/V7aWfxKCWF
Fact #20: O.R.S.A. has awarded over $500,000 in research grants since 2014. Each donation to The Hope Fund goes directly to research with no administrative fee taken by O.R.S.A.https://t.co/kkURCsHWKnpic.twitter.com/dsWrNWJw9I
Fact #21: Our mission – The Ontario Rett Syndrome Association (O.R.S.A.) exists 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. pic.twitter.com/UDdKlUwjCn
Fact #23: The Rett Classic golf tournament, one of our signature fundraising events, has been run annually since 2005. We missed the past two years due to COVID-19 but hope to be back next year. pic.twitter.com/lhccN8XDk2
Fact #24: O.R.S.A. values your feedback. If your family attends one of our Rett clinics, please consider completing our clinic satisfaction survey. We would love to hear ideas on how we can help improve your clinic experience.https://t.co/7G2NefOgfZpic.twitter.com/DrH8gyG8CT
Fact #25: O.R.S.A. was the first Canadian Rett syndrome charity. There are now groups in B.C., Alberta, Saskatchewan, Manitoba and Quebec. We meet regularly to coordinate on national interests. pic.twitter.com/kap8kNMHyP
Fact #27: We have offered memberships since 1993. Sign up today for a free lifetime membership to stay fully connected and give us a stronger voice.https://t.co/emCREbj9m8pic.twitter.com/t3anekwb12
Fact #28: O.R.S.A. hosts bi-annual conferences that bring together families with researchers and medical professionals. While our 2020 conference was virtual, we look forward to gathering with our community in the future. pic.twitter.com/7jCntG4oxO
Fact #29: The first Rett clinic in Ontario was started by Dr. Peter Humphreys at CHEO in Ottawa in 2006 with the support of O.R.S.A. We continue to support the CHEO clinic along with 2 other clinics in the province. pic.twitter.com/BREz52WdSg
Our 30th Anniversary is officially here on July 26th. Stay tuned over the next 30 days as we share facts about O.R.S.A. past and present. pic.twitter.com/lM7oMe6zau
The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of two research grants totalling $78,750 from The Hope Fund for 2021. This is the second largest amount approved in a single year and with this release, The Hope Fund has funded over $600,000 in Canadian research to date.
O.R.S.A. has awarded $25,000 plus indirect costs to Dr. Alex Weber’s study entitled Functional, Metabolic, and Structural MRI Findings in Rett Syndrome. Dr Alex Weber is a newer researcher to the Canadian Rett syndrome field. He intends to study white matter differences between individuals with Rett syndrome and age-matched controls, and explore the associations between clinical severity and MRI findings, hoping that this may eventually lead to future targeted therapy. This is a pilot study which hopes to lead to further and larger grants through the Canadian Institute of Health Research.
O.R.S.A. has also awarded $50,000 to Dr Mojgan Rastegar’s study is entitled Targeting the molecular and structural abnormalities of brain cells for Rett Syndrome. She is a two-time past shared-award winner, and a very prominent Rett syndrome researcher in Canada who has shown passion, dedication, and persistence toward Rett syndrome research. Her study plans to explore whether the molecular and cellular changes in Rett syndrome brains affect the brain uniformly or are more region-specific, and to further explore the potential for a current existing drug (metformin) to play a rescue role at a cellular level. This was a well-reviewed research proposal from a well-established Canadian researcher.
Grant applications were received and evaluated by O.R.S.A.’s Research Advisory Committee which is comprised of impartial and prominent neurologists, geneticists and scientists from across Canada. O.R.S.A. would like to thank all those individuals that applied for this grant.
The Hope Fund was established in 2014. The funds for this research grant were raised through donations and fundraising activities. O.R.S.A. continues to support research excellence and the development of a wide scope of Rett syndrome research across Canada.
Dr. Alex Weber, as a neuroimaging scientist, applies non-invasive imaging techniques, such as magnetic resonance imaging, to help neuroscientists and clinicians better understand brain health, brain disorders, and potential treatments for brain disorders. His long-term goal is to develop specific and sensitive quantitative biomarkers of anatomical, functional and metabolic characteristics of brain health in newborns and children. Early recognition and classification combined with brain interventions are key in the prevention or reduction of progressive and chronic lifelong disabilities such as cerebral palsy, epilepsy, and behavioural and learning disorders. Currently, objective neuroimaging markers of treatment responses are urgently needed to accelerate clinical trials and focus our search for effective treatments. Over the past decade (four-year PhD, four-year postdoctoral fellow, and two years as an Assistant Professor), he has developed the expertise for a wide range of advanced MRI techniques, and made discoveries in brain health in newborns, children and youth. This work has been widely disseminated through publications, media interviews, presentations, clinical/radiology engagement, and open science avenues.
Dr. Mojgan Rastegar is a Professor of Biochemistry & Medical Genetics, at the University of Manitoba. Dr. Rastegar obtained a PhD degree in Biomedical Sciences from the Université Catholique de Louvain (UCL), Brussels, Belgium, and performed her postdoctoral trainings at the Hospital for Sick Children (Toronto, Canada), McGill University (Montreal, Canada), and Indiana University-Purdue University (Indianapolis, USA). Dr. Rastegar research program is focused on the molecular mechanisms that control brain development and their involvement in neurodevelopmental disorders including Rett Syndrome (RTT). To study RTT mechanism of disease, Dr. Rastegar laboratory uses a combination of murine and human in vivo and in vitro systems that includes primary neural stem cells, human brain cell lines, transgenic mice, and post-mortem human brain tissues. Dr. Rastegar has recently established the Human Rett Syndrome Brain Bio-Repository Laboratory in Manitoba, through the support of O.R.S.A. and private donations. This laboratory currently includes a cohort of male and female human brain tissues from RTT patients at different ages with age- and sex-matched non-RTT human control brains. An objective of Dr. Rastegar research program is to understand how molecular and cellular deficiencies in the human RTT brains lead to the associated disease phenotypes in patients. Her research program further seeks to determine what is commonly impacted amongst RTT patients and other RTT model systems. The outcome of her research studies is expected to identify novel therapeutic strategies for MeCP2-associated rare and common neurodevelopmental disorders that currently have no available cure.
Over the years, Dr. Rastegar’s research program has been supported by national, international, and local funding, and she has published over 50 peer-reviewed papers, 15 of them being on Rett Syndrome and MeCP2. Many of her trainees have been authors of these publications and her students have been successful in obtaining national scholarships including CIHR and NSERC studentships.
Dr. Rastegar is part of Board of Directors at the Canadian Society of Molecular Biosciences (CSMB). She is also an Editorial Board member of reputable journals such as Scientific Reports, Frontiers in Genetics, Neural Plasticity, Frontiers in Cell & Developmental Biology.
The Ontario Rett Syndrome Association (O.R.S.A.) is a volunteer, not-for-profit charity for parents, caregivers, researchers, medical professionals and other interested support agencies and individuals. O.R.S.A. became incorporated in 1991. Its Board of Directors is comprised of parents and caring citizens. Support is provided to families regionally. The association funds Canadian research projects, three Rett Syndrome Clinics, bi-annual conferences and developed the Canadian Rett Syndrome Registry. O.R.S.A. advocates to the needs of individuals with Rett syndrome and their families provincially and nationally.
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:
Human resources
Social work
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.
Available Packages
Free Shipping within Ontario. Shipping available outside of Ontario.
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
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.
Run4Rett – Virtual – October 2021
Last Updated: 11/13/2021 by Bryan Higgins
You’re invited to the virtual Run4Rett, taking place from October 1st to October 31st, 2021.
October is Rett Awareness month, what better way to raise awareness!
Run by yourself or with friends and family – you can run whenever, wherever – run on a treadmill, around your neighbourhood or any course of your choosing. This is an opportunity to unite via social media with other families and friends supporting the same cause. Again this year we unite in our own backyard instead of Richmond Hill. You will have your own finish line, but you won’t be alone! You will be connected together with the unbreakable spirit of all our loved ones with Rett syndrome.
You can set up a fundraising page through your Running Room account, after you have registered for the Run.
The 17th annual 1k and 5k walk / run is a signature fundraiser for the Ontario Rett Syndrome Association (O.R.S.A.).
All proceeds fund crucial activities organized by O.R.S.A.’s volunteer board of directors. These include:
Please JOIN US! Walk or run for the 1K or 5K with your social circle! Share your pictures with us to be featured on social media.
Register Online – Closes October 31st
Download Pledge Sheet
2021 Annual General Meeting
Posted: 08/24/2021 by Bryan Higgins
Thursday, August 26th, 2021
8:00pm – 9:00pm
All are welcome to join.
Members have been sent a package with proxy forms via email.
Please join using this link:
https://us02web.zoom.us/j/85810662632?pwd=RSt0OWx5aXNvYm1kcGNyZ2pyaXpjZz09
AGENDA
Rett Syndrome Awareness Lawn Signs
Last Updated: 11/12/2021 by Steve
This year we are expanding our October Awareness Campaign with reusable lawn signs.
These signs are available free of charge to O.R.S.A. members, friends, and family who are interested.
Lawn signs are available on a first come first serve basis. As the number of signs are limited, you may order up to 5 per address for you and family and friends.
Help us spread awareness and build our social feed. Take a photo and #ORSASTRONG and tag Ontario Rett Syndrome Association.
We have currently reached our stock limit for this year. Thank you to everyone that will be participating.
O.R.S.A. Turns 30
Last Updated: 04/06/2022 by Bryan Higgins
The Ontario Rett Syndrome Association (O.R.S.A.) was incorporated on July 26, 1991. Launched from a small group of parents, the organization has grown tremendously over the past 30 years. O.R.S.A. funds 3 Rett syndrome clinics, has awarded over $600,000 in research grants, organizes educational events, runs the Canadian Rett Syndrome Registry and provides resources for families.
To celebrate this milestone, we have launched two podcasts!
Special 30th Anniversary Podcast
Listening To Hope
Listening To Hope celebrates recipients of grants from The Hope Fund. The first two episodes are available now. We will be releasing a new episode each Monday for the next 4 weeks.
2021 Hope Fund Grants
We have just announced our 2021 Hope Fund grant recipients. To date, over $600,000 in grants have been awarded.
Social Media
We have posted 30 facts about O.R.S.A. leading up to the 30th anniversary. Please subscribe to our social media channels to stay up to date!
https://www.facebook.com/OntarioRettSyndromeAssociation
https://www.instagram.com/ontrettsyndromeassociation/?hl=en
https://twitter.com/ontariorettsa?lang=en
2021 Hope Fund Grants Awarded
Last Updated: 04/06/2022 by Bryan Higgins
July 25, 2021
The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of two research grants totalling $78,750 from The Hope Fund for 2021. This is the second largest amount approved in a single year and with this release, The Hope Fund has funded over $600,000 in Canadian research to date.
O.R.S.A. has awarded $25,000 plus indirect costs to Dr. Alex Weber’s study entitled Functional, Metabolic, and Structural MRI Findings in Rett Syndrome. Dr Alex Weber is a newer researcher to the Canadian Rett syndrome field. He intends to study white matter differences between individuals with Rett syndrome and age-matched controls, and explore the associations between clinical severity and MRI findings, hoping that this may eventually lead to future targeted therapy. This is a pilot study which hopes to lead to further and larger grants through the Canadian Institute of Health Research.
O.R.S.A. has also awarded $50,000 to Dr Mojgan Rastegar’s study is entitled Targeting the molecular and structural abnormalities of brain cells for Rett Syndrome. She is a two-time past shared-award winner, and a very prominent Rett syndrome researcher in Canada who has shown passion, dedication, and persistence toward Rett syndrome research. Her study plans to explore whether the molecular and cellular changes in Rett syndrome brains affect the brain uniformly or are more region-specific, and to further explore the potential for a current existing drug (metformin) to play a rescue role at a cellular level. This was a well-reviewed research proposal from a well-established Canadian researcher.
Grant applications were received and evaluated by O.R.S.A.’s Research Advisory Committee which is comprised of impartial and prominent neurologists, geneticists and scientists from across Canada. O.R.S.A. would like to thank all those individuals that applied for this grant.
The Hope Fund was established in 2014. The funds for this research grant were raised through donations and fundraising activities. O.R.S.A. continues to support research excellence and the development of a wide scope of Rett syndrome research across Canada.
Dr. Alex Weber, as a neuroimaging scientist, applies non-invasive imaging techniques, such as magnetic resonance imaging, to help neuroscientists and clinicians better understand brain health, brain disorders, and potential treatments for brain disorders. His long-term goal is to develop specific and sensitive quantitative biomarkers of anatomical, functional and metabolic characteristics of brain health in newborns and children. Early recognition and classification combined with brain interventions are key in the prevention or reduction of progressive and chronic lifelong disabilities such as cerebral palsy, epilepsy, and behavioural and learning disorders. Currently, objective neuroimaging markers of treatment responses are urgently needed to accelerate clinical trials and focus our search for effective treatments. Over the past decade (four-year PhD, four-year postdoctoral fellow, and two years as an Assistant Professor), he has developed the expertise for a wide range of advanced MRI techniques, and made discoveries in brain health in newborns, children and youth. This work has been widely disseminated through publications, media interviews, presentations, clinical/radiology engagement, and open science avenues.
Dr. Mojgan Rastegar is a Professor of Biochemistry & Medical Genetics, at the University of Manitoba. Dr. Rastegar obtained a PhD degree in Biomedical Sciences from the Université Catholique de Louvain (UCL), Brussels, Belgium, and performed her postdoctoral trainings at the Hospital for Sick Children (Toronto, Canada), McGill University (Montreal, Canada), and Indiana University-Purdue University (Indianapolis, USA). Dr. Rastegar research program is focused on the molecular mechanisms that control brain development and their involvement in neurodevelopmental disorders including Rett Syndrome (RTT). To study RTT mechanism of disease, Dr. Rastegar laboratory uses a combination of murine and human in vivo and in vitro systems that includes primary neural stem cells, human brain cell lines, transgenic mice, and post-mortem human brain tissues. Dr. Rastegar has recently established the Human Rett Syndrome Brain Bio-Repository Laboratory in Manitoba, through the support of O.R.S.A. and private donations. This laboratory currently includes a cohort of male and female human brain tissues from RTT patients at different ages with age- and sex-matched non-RTT human control brains. An objective of Dr. Rastegar research program is to understand how molecular and cellular deficiencies in the human RTT brains lead to the associated disease phenotypes in patients. Her research program further seeks to determine what is commonly impacted amongst RTT patients and other RTT model systems. The outcome of her research studies is expected to identify novel therapeutic strategies for MeCP2-associated rare and common neurodevelopmental disorders that currently have no available cure.
Over the years, Dr. Rastegar’s research program has been supported by national, international, and local funding, and she has published over 50 peer-reviewed papers, 15 of them being on Rett Syndrome and MeCP2. Many of her trainees have been authors of these publications and her students have been successful in obtaining national scholarships including CIHR and NSERC studentships.
Dr. Rastegar is part of Board of Directors at the Canadian Society of Molecular Biosciences (CSMB). She is also an Editorial Board member of reputable journals such as Scientific Reports, Frontiers in Genetics, Neural Plasticity, Frontiers in Cell & Developmental Biology.
The Ontario Rett Syndrome Association (O.R.S.A.) is a volunteer, not-for-profit charity for parents, caregivers, researchers, medical professionals and other interested support agencies and individuals. O.R.S.A. became incorporated in 1991. Its Board of Directors is comprised of parents and caring citizens. Support is provided to families regionally. The association funds Canadian research projects, three Rett Syndrome Clinics, bi-annual conferences and developed the Canadian Rett Syndrome Registry. O.R.S.A. advocates to the needs of individuals with Rett syndrome and their families provincially and nationally.
Last Updated: 09/08/2021 by Bryan Higgins
Applications for our Board of Directors are Now Being Accepted
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:
Board Member Expectations:
Please submit your application to kmorton@rett.ca.
COVID-19 Vaccination Update
Last Updated: 08/24/2021 by Bryan Higgins
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.
https://vaccineto.ca/sites
https://covidvaccine.uhn.ca/vaccination-registration-form
https://covid-19.ontario.ca/getting-covid-19-vaccine-ontario
https://www.health.gov.on.ca/en/pro/programs/publichealth/coronavirus/docs/vaccine/COVID-19_Phase_2_vaccination_prioritization.pdf
https://www.tvo.org/article/heres-what-ontarios-latest-vaccine-plan-says
https://www.680news.com/2021/03/08/proof-pre-existing-illness-covid19-vaccine-ontario-data-glitch-cases-ontario-government/
O.R.S.A. Face Masks
Last Updated: 08/24/2021 by Bryan Higgins
Due to popular demand, our O.R.S.A. branded face masks are now available to purchase in our web store.
$10 per mask available in Adult and Youth. Limit 5 per household. Free shipping anywhere in Canada.
www.rett.ca/masks
Uncork Valentine’s Wine Packages
Last Updated: 03/08/2021 by Steve
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 1.888.778.7758 and 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.
Available Packages
Shipping available outside of Ontario.
Shipping available outside of Ontario.
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 1.888.778.7758 and reference our Rett fundraiser. Thank you for support.
Last Updated: 04/19/2021 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