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
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
Category: News