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

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.

2020 Conference Postponed Due to COVID-19

The Ontario Rett Syndrome Association (O.R.S.A.) is closely monitoring the development of COVID-19 (Coronavirus), that has spread quickly to other countries and into our communities, which is associated with respiratory illness.  The World Health Organization has now declared this a Pandemic. 

Ontario’s chief medical officer now recommends the immediate suspension of all gatherings over 250 people because of the risks of COVID-19. Thus, O.R.S.A. has decided to postpone the conference planned for May 2020. Individuals with Rett syndrome are often susceptible to complications from respiratory illness and many of the speakers work at hospitals and other health care organizations that have travel restrictions in place or are considering them. 

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. During this extraordinary time, we will continue our mission in ways that do not add unnecessary risk. 

  • The conference planned for May 22 – 24 in London, Ontario has been postponed. 
  • An announcement will be sent by email and posted on our website and social media if/when a new date has been confirmed. 
  • Refunds will be issued for all conference passes. 
  • O.R.S.A. will explore alternative means of providing information especially as related to the impact of COVID-19 on the Rett syndrome population.

 We are available to answer any questions or concerns and will be sending you further updates as they become available.