Please join us Wednesday July 22nd at 7pm EST for a Q&A session with physicians from the Ontario Rett syndrome clinics. This is a great opportunity to have your questions answered and hear about other common concerns. Questions can be sent to us in advance at info@rett.ca or through our social media pages.
Pre-register here: https://us02web.zoom.us/meeting/register/tZMrde-sqT0pHdHXJF1nXzrtXgg0iwRasifr
Melissa Carter, MD
Dr.Carter specializes in the genetic evaluation of individuals with neurodevelopmental disorders. She is the Medical Director of CHEO’s Rett Syndrome Clinic and also co-directs CHEO’s Angelman Syndrome Clinic. In 2011, she joined the faculty at the University of Toronto as Assistant Professor of Paediatrics and staff Clinical Geneticist at the Hospital for Sick Children. In May 2016, she became staff Clinical Geneticist at the Regional Genetics Program at the Children’s Hospital of Eastern Ontario (CHEO), where she is currently an Associate Professor of Paediatrics with the University of Ottawa.
Caitlin Cassidy, MD
Dr.Cassidy is currently an Assistant Professor in the Departments of PM&R and Paediatrics at Western University. Dr. Cassidy’s main clinical focus is in the Transitional and Lifelong Care (TLC) Program, housed primarily at Parkwood Institute, St. Joseph’s Health Care London (St. Joseph’s). The program provides long term rehabilitative care to people with chronic and sometimes complex conditions of childhood onset, including Cerebral Palsy, Spina Bifida, Rett syndrome and others.
Erick Sell, MD
Dr. Erick Sell completed his medical degree at the University of Medical Sciences of Central America in 1997 followed by post-graduate training in pediatrics at the National Children’s Hospital in San Jose, Costa Rica in 2002. He then completed two fellowships – pediatric neurology and pediatric epilepsy – both at the Hospital for Sick Children in Toronto from 2002 to 2006. After completing these fellowships, he returned to Costa Rica in 2007 and worked at the National Children’s Hospital in San Jose, in the epilepsy monitoring unit and the Vagal nerve program. He returned once more to CHEO in 2010 where his research interests include pediatric epilepsy and electroencephalography.
Victoria Siu, MD
Dr. Siu is the Medical Director of the Medical Genetics Program of Southwestern Ontario. She completed her training in Paediatrics and Medical Genetics at the Hospital for Sick Children in Toronto and Children’s Hospital of Western Ontario in London. She has had a longstanding interest in Rett syndrome, inspired by Dr. Patrick Macleod. In 2000, she was a co-investigator on a project funded by O.R.S.A. to perform mutation analysis of the MeCP2 gene. She founded the Rett Syndrome clinic at Thames Valley Children’s Centre in London in March 2010, and enjoys working with a multidisciplinary team providing care to many wonderful girls and their families.
Uncorked Rett is Here
Last Updated: 02/01/2021 by Steve
LET’S WINE DOWN 2020 – ONE SIP AT A TIME
We have teamed up with Fielding Estate Winery, in Beamsville, Ontario to offer you some great wine packages as the holiday approaches. 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, but for other Provinces and Territories, accommodations can be made through Fielding Estate Winery.
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.
2020 Awareness Month
Last Updated: 11/25/2020 by Steve
While October is over and both Rett Syndrome Awareness Month and our first virtual Run4Rett has concluded, we are not stopping our efforts. While this year has been challenging for all of us, we would like to thank everyone who participated in the run from across country. It was so amazing to see everyone helping us spread awareness across the globe!
This year we have increased the number of communities involved with both lighting Canada purple on October 29th, with the help of our sister organizations across Canada. We thank everyone involved to help grow this event each year. Here is a list of Ontario locations.
We have also been working hard to increase the number of communities to proclaim October as Rett Syndrome Awareness Month. This year we had increased the number of proclamations in Ontario to 26.
Still Accepting Donations
Last Updated: 11/25/2020 by Steve
The Running Room fundraising page has now closed, but we are still accepting donations through our website.
All proceeds fund crucial activities organized by O.R.S.A.’s volunteer board of directors. These include:
A Few Photos From Our Virtual Run4Rett
Canada was LIT UP!
Last Updated: 11/25/2020 by Steve
October is Rett Syndrome Awareness Month. This year we are joining with our sister organizations to the west to light up attractions and buildings across the country.
Send us your photos and make sure to use hashtag #LightCanadaPurple
2020 Ontario Purple Themed Lighting Locations
2020 Canada Purple Themed Lighting Locations
Online Auction – Closes November 12 @ 5pm (EST)
Last Updated: 11/12/2020 by Steve
Some of you may or may not be aware that the annual Run4Rett typically hosted a Silent Auction the day of the race. This year due to COVID-19 O.R.S.A. decided to host the 16th Annual Run4Rett virtually. Just like the run, hosting the annual silent auction had to be reinvented.
The auction will close on Thursday, November 12th at 5:00 p.m.
Click button below to take a look at the 16th Annual Run4Rett Silent Auction.
Let the bidding begin!
Photos Wanted – Virtual Run4Rett 2020
Last Updated: 11/25/2020 by Steve
Due to the pandemic, we were unable to gather together in Richmond Hill for our annual Run4Rett. We miss seeing everyone’s faces and catching up with what is new in everyone’s life. Since, we couldn’t meet in person that doesn’t mean we don’t want to see everyone.
Please send us your virtual Run4Rett photos, so we can share with everyone.
You can also share them on social media using the hashtag #Run4Rett or tag us with the following handles:
You can also email them to smiguel@rett.ca
Run4Rett – Virtual – October 2020
Last Updated: 11/01/2020 by Bryan Higgins
You’re invited to the Virtual 2020 RUN4RETT, taking place from October 1st to October 31st, 2020.
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. This year however 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 16th 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 29th
Last Updated: 10/25/2020 by Bryan Higgins
2020 AGM – September 24th
Please join us for our annual general meeting to be held via zoom
All are welcome!
Thursday, September 24th, 2020
8:00pm – 9:00pm
Please register here in advance:
https://us02web.zoom.us/meeting/register/tZ0sc-uvrjIoHNWfsUBQWAdh96zcWbwSPMoM
Membership must have been obtained at least 45 days prior to the meeting in order to be eligible to vote at the meeting. Complete package with proxy forms will be sent to all members by email.
AGENDA
1. Introductions
1.1. Proxy Forms
2. Approval of Agenda
3. Approval of Minutes of Saturday, August 10, 2019AGM
4. President’s Letter
5. Treasurer’s Report
6. Appointment of Auditor
7. Reports from Committees
8. Election of Directors
9. Adjournment
Posted: 07/12/2020 by Bryan Higgins
Ontario Rett Syndrome Medical Panel
Please join us Wednesday July 22nd at 7pm EST for a Q&A session with physicians from the Ontario Rett syndrome clinics. This is a great opportunity to have your questions answered and hear about other common concerns. Questions can be sent to us in advance at info@rett.ca or through our social media pages.
Pre-register here: https://us02web.zoom.us/meeting/register/tZMrde-sqT0pHdHXJF1nXzrtXgg0iwRasifr
Melissa Carter, MD
Dr.Carter specializes in the genetic evaluation of individuals with neurodevelopmental disorders. She is the Medical Director of CHEO’s Rett Syndrome Clinic and also co-directs CHEO’s Angelman Syndrome Clinic. In 2011, she joined the faculty at the University of Toronto as Assistant Professor of Paediatrics and staff Clinical Geneticist at the Hospital for Sick Children. In May 2016, she became staff Clinical Geneticist at the Regional Genetics Program at the Children’s Hospital of Eastern Ontario (CHEO), where she is currently an Associate Professor of Paediatrics with the University of Ottawa.
Caitlin Cassidy, MD
Dr.Cassidy is currently an Assistant Professor in the Departments of PM&R and Paediatrics at Western University. Dr. Cassidy’s main clinical focus is in the Transitional and Lifelong Care (TLC) Program, housed primarily at Parkwood Institute, St. Joseph’s Health Care London (St. Joseph’s). The program provides long term rehabilitative care to people with chronic and sometimes complex conditions of childhood onset, including Cerebral Palsy, Spina Bifida, Rett syndrome and others.
Erick Sell, MD
Dr. Erick Sell completed his medical degree at the University of Medical Sciences of Central America in 1997 followed by post-graduate training in pediatrics at the National Children’s Hospital in San Jose, Costa Rica in 2002. He then completed two fellowships – pediatric neurology and pediatric epilepsy – both at the Hospital for Sick Children in Toronto from 2002 to 2006. After completing these fellowships, he returned to Costa Rica in 2007 and worked at the National Children’s Hospital in San Jose, in the epilepsy monitoring unit and the Vagal nerve program. He returned once more to CHEO in 2010 where his research interests include pediatric epilepsy and electroencephalography.
Victoria Siu, MD
Dr. Siu is the Medical Director of the Medical Genetics Program of Southwestern Ontario. She completed her training in Paediatrics and Medical Genetics at the Hospital for Sick Children in Toronto and Children’s Hospital of Western Ontario in London. She has had a longstanding interest in Rett syndrome, inspired by Dr. Patrick Macleod. In 2000, she was a co-investigator on a project funded by O.R.S.A. to perform mutation analysis of the MeCP2 gene. She founded the Rett Syndrome clinic at Thames Valley Children’s Centre in London in March 2010, and enjoys working with a multidisciplinary team providing care to many wonderful girls and their families.
Posted: 05/17/2020 by Bryan Higgins
Al-Terra Engineering Charity Drive Raises over $30,000 for The Hope Fund
The Ontario Rett Syndrome Association is pleased to announce that Al-Terra Engineering based in Edmonton Alberta raised over $30,000 for The Hope Fund in 2019 through their annual charity drive. Kelly Persaud, an employee of Al-Terra who has an 11 year old daughter named Lennox with Rett syndrome, was chosen as one of two charity drive leads. Rather than vote on a charity for the year, Al-Terra’s leadership unanimously decided they should support Rett syndrome research.
Events throughout the year included Pi(e) Day (pie in face competition on 3/14), Rett Syndrome Charity Hockey Tournament, Minute-To-Win-It, Ride or Stride and October Awareness Month. Al-Terra matched donations made by employees and the public at these events. Scroll below for some great photos.
All proceeds from Al-Terra’s charity drive has been added to The Hope Fund. Established in 2014, The Hope Fund provides grants to Canadian scientists conducting research towards the goal of finding a treatment or cure for Rett syndrome. The Hope Fund has funded over $500,000 in Canadian research to date.
O.R.S.A. would like to thank Al-Terra and Kelly for their passion and commitment to the cause. We look forward to sharing details of our 2020 grant recipients later this year.