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

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. 

Canada’s First Clinical Trial for Rett Syndrome to Commence Early 2020

As many are anticipating an update on the long-awaited Clinical Trial in Canada, we felt that October was the best time to provide everyone an update on the Pilot Study of an Antioxidant Cocktail vs. Placebo in the Treatment of Children and Adolescents with Rett Syndrome

As we are aware, there are currently no available medicines shown to be effective for Rett Syndrome. Numerous studies implicate mitochondrial dysfunction and oxidative stresses in the pathophysiology of Rett Syndrome. Mitochondrial dysfunction has been reported in Rett patients, Rett mouse models and MECP2-deficient cells. Collaborators have tested a combination of specific antioxidants known to enhance mitochondrial function in a cell and mouse model of Rett Syndrome. The formulation normalized mitochondrial membrane potential in MECP2 neurons, and MECP2-deficient mice displayed improved exploratory, locomotor and social behaviour compared to MECP2-deficient mice. These results support testing anti-oxidative strategies for benefit in individuals with Rett Syndrome. In this study, the formulation has been adjusted and optimized based on current guidelines for human use, with the goal of translating a potential new treatment from the animal model to use in humans. Results of this study could lead to the first approved medication treatment for the disorder.

This study is an 18-week pilot, single site, randomized, double blind, placebo-controlled cross-over trial of Rett-T vs. placebo. Periods I and II of the randomized study are 8 weeks long with a 2-week washout period. The Holland Bloorview Kids Rehabilitation Hospital (Toronto) will be starting to recruit in the beginning of 2020. The manufacturing company has confirmed the production of the Antioxidant Cocktail in advance of the recruiting process.

For the full details of the Clinical Trial, please visit: https://clinicaltrials.gov/ct2/show/NCT04041713…

October is Rett Syndrome Awareness Month

October is Rett Syndrome Awareness Month internationally and has been officially recognized by the Government of Canada.

https://www.canada.ca/en/health-canada/services/calendar-health-promotion-days.html

Once again, major attractions across Ontario will be lit purple on October 29th.

Belleville, Ontario – October 29 

  • Belleville Signature Sign 
  • Bridge Street Bridge 

Brampton, Ontario – October 29

  • Clock Tower at City Hall

Cambridge, Ontario – October 28, 29, & 30 

  • City Hall and Signature Sign 
  • Pedestrian Bridge

Fort Erie, Ontario – October 29

  • Peace Bridge

Guelph, Ontario – October 29 

  • Market Square 

Hamilton, Ontario – October 28, 29, 30 

  • Hamilton Signature Sign – City Hall 
  • MacKids 

London, Ontario – October 28, 29, 30 

  • City of London Buildings

Mississauga, Ontario – October 29  

  • Civic Centre Clock Tower 

Oakville, Ontario – October 29

  • Town Hall  

Newmarket, Ontario – October 29 

  • Riverwalk Commons and Fred A. Lundy Bridge 

Niagara Falls, Ontario – October 29 

  • Niagara Falls 

Paris, Ontario – October 29

  • Paris Falls at Penman’s Dam in Downtown Paris

Thunder Bay, Ontario – October 29 

  • City Hall Lights 

Toronto, Ontario – October 29 

  • CN Tower 
  • 3D Toronto Sign 
  • City Hall Tower Lights 
  • Exhibition Place – Princes’ Gates 

We encourage everyone to light up their homes or business place purple as well! We have a flyer with basic information about Rett syndrome available to download and print for sharing with your neighbours.

Please send any photos to us on Facebook, Twitter or email bhiggins@rett.ca. Watch our social media accounts for lots of updates throughout the month.