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

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.

O.R.S.A. Turns 30

The Ontario Rett Syndrome Association (O.R.S.A.) was incorporated on July 26, 1991. Launched from a small group of parents, the organization has grown tremendously over the past 30 years. O.R.S.A. funds 3 Rett syndrome clinics, has awarded over $600,000 in research grants, organizes educational events, runs the Canadian Rett Syndrome Registry and provides resources for families.

To celebrate this milestone, we have launched two podcasts!

Special 30th Anniversary Podcast

Listening To Hope

Listening To Hope celebrates recipients of grants from The Hope Fund. The first two episodes are available now. We will be releasing a new episode each Monday for the next 4 weeks.

2021 Hope Fund Grants

We have just announced our 2021 Hope Fund grant recipients. To date, over $600,000 in grants have been awarded.

Social Media

We have posted 30 facts about O.R.S.A. leading up to the 30th anniversary. Please subscribe to our social media channels to stay up to date!

https://www.facebook.com/OntarioRettSyndromeAssociation

https://www.instagram.com/ontrettsyndromeassociation/?hl=en

https://twitter.com/ontariorettsa?lang=en