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.
O.R.S.A. Turns 30
Last Updated: 07/25/2021 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: 07/24/2021 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: 06/15/2021 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: 04/03/2021 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: 04/19/2021 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