P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

Run4Rett – Virtual – October 2020

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:

  • 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.

Register Online – Closes October 29th

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

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. 

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.

COVID-19 Statement

The COVID-19 global pandemic has forced dramatic changes to all our lives. Individuals with Rett syndrome and their families may be struggling to adjust to this new reality. The Ontario Rett Syndrome Association (O.R.S.A.) stands with you and is here to support you. 

All three Rett syndrome clinics in Ontario have suspended in person appointments. If you have an upcoming appointment and have not been contacted, you should get in touch with your clinic coordinator. Appointments may be rescheduled or done by phone. 

The Pilot Study of an Antioxidant Cocktail vs. Placebo at Holland Bloorview Kids Rehabilitation Hospital will not be recruiting patients at this time. Most of the clinical trials for Rett syndrome in the United States have been put on hold as well. 

Due to social distancing we have postponed the conference planned for May and we will not be holding the Rett Classic golf tournament this June. We will provide an update in the coming weeks on the status of these events and Run4Rett. 

Here are some resources that may be helpful: 

O.R.S.A. will continue to provide updates as they become available. Feel free to contact us at info@rett.ca with any questions or concerns. Together we will get through this.