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

ANAVEX2-73 Study Now Recruiting in Canada

Anavex Life Sciences Corp has just announced they are recruiting patients for their study of ANAVEX2-73 in Rett syndrome patients at British Columbia Children’s Hospital in Vancouver. The study is the first ever clinical trial for Rett syndrome in the Canada.

This is a 12-week study of ANAVEX2-73, a liquid medication administered by mouth, for the treatment of patients with Rett syndrome between 5-17 years of age. The study is randomized, meaning 2 out of 3 participants will receive the study drug and 1 out of 3 will receive placebo. The placebo is an inactive liquid solution that looks and tastes just like the study medication but has no effects. The study involves 4 in-person visits at the clinical site, and 4 phone calls. Participants that complete the trial will be offered the option to enrol in a 48-week Open Label Extension, where all participants will receive the active study drug (not placebo). Study visits will include collection of blood and urine, ECGs (measures electrical activity of the heart), physical examinations and questionnaires completed by the patient’s caregiver. Travel expenses related to visits, such as flights, mileage and food, will be reimbursed by the study.

If you are interested in participating and would like to be added to the contact list please email, Sabrina Millson at smillson@rett.ca.

Include the following details in your email:
– Name
– Province
– Contact number

For more information on the study, including full inclusion and exclusion criteria, please visit ClinicalTrials.gov:

https://clinicaltrials.gov/ct2/show/NCT04304482

Taysha Community Updates – September 2021

Taysha Gene Therapies has shared the following updates from an educational event held this month with investors. Progress is continuing on TSHA-102, the investigational gene therapy for Rett syndrome. They plan to enroll patients 18 years or older for the first clinical trial.

September 22, 2021 Update

September 24, 2021 Update

Run4Rett – Virtual – October 2021

You’re invited to the virtual Run4Rett, taking place from October 1st to October 31st, 2021.

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. Again this year 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 17th 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 31st

Download Pledge Sheet

2021 Annual General Meeting

Thursday, August 26th, 2021
8:00pm – 9:00pm

All are welcome to join.

Members have been sent a package with proxy forms via email.

Please join using this link:
https://us02web.zoom.us/j/85810662632?pwd=RSt0OWx5aXNvYm1kcGNyZ2pyaXpjZz09

AGENDA

  1. Introductions and Proxy Forms
  2. Approval of Agenda
  3. Approval of Minutes of Thursday, September 24, 2020 AGM
  4. President’s Letter
  5. Treasurer’s Report
  6. Appointment of Auditor
  7. Reports from Committees
  8. Election of Directors
  9. Adjournment

Rett Syndrome Awareness Lawn Signs

This year we are expanding our October Awareness Campaign with reusable lawn signs. 

These signs are available free of charge to O.R.S.A. members, friends, and family who are interested. 

Lawn signs are available on a first come first serve basis. As the number of signs are limited, you may order up to 5 per address for you and family and friends. 

Help us spread awareness and build our social feed. Take a photo and #ORSASTRONG and tag Ontario Rett Syndrome Association.

We have currently reached our stock limit for this year. Thank you to everyone that will be participating.