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

Call for Speakers

On behalf of the Ontario Rett Syndrome Association conference committee, we’re excited to begin planning the presentations for our conference in London, Ontario on May 22 – 24, 2020. Thank you to everyone who completed the conference survey.  

Do you have a specific person in mind who would be a great speaker at our conference?  

Do you have a favourite presentation from years past?  

For more information visit our, conference website, you will see a page called Be A Speaker. You are welcome to send this link to any potential presenter and invite them to make a submission. Due to scheduling and funding limitations, not all proposals will become part of the conference 

Thank you for helping us generate ideas!  

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

Our next conference will be held May 22 – 24, 2020 in London, Ontario.

More details will become available in the coming months.

We hope to see you in May!

https://conference.rett.ca/

Annual General Meeting 2019

Please join us for our annual general meeting.

All are welcome!

Saturday, August 10, 2019

9:00am – 1:30pm

Holiday Inn Hotel & Suites
2565 Argentia Rd, Mississauga, ON L5N 5V4
2nd Floor

Membership must have been obtained at least 45 days (by June 26th, 2019) 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 prior to July 10th.

RSVP: Scott Campbell scampbell@rett.ca
By: July, 29, 2019

Agenda

1. Introductions and Circulation of Attendance List and Proxy Forms

2. Approval of Agenda

3. Approval of Minutes of Friday, August 10, 2018 AGM

4. President’s Letter

5. Treasurer’s Report

6. Appointment of Auditor

7. Reports from Committees

8. Election of Directors

9. Board Member Recognition

10. Guest Speaker – Dr. Evdokia Anagnostou

11. Adjournment

12. Lunch