The Ontario Rett Syndrome Association continues to expand and develop in new ways to support its members. Membership fees help make this possible!
2014 was an exciting year to be a part of the Ontario Rett Syndrome Association. Some of the highlights of our year were:
Hosted the We “R” Family Conference with over 190 attendees traveling from 8 provinces to participate in the bi-annual educational event.
Launched the Canadian Rett Syndrome Registry. This registry is important to families across Canada as future drug trials for Rett syndrome can only be implemented in Canada through an approved registry.
Creation of The Hope Fund that exists solely for research. 100% of all these dollars will go to Rett syndrome research to find a cure and/or treatment for Rett syndrome. The Hope Fund is releasing a $50,000 research grant in early 2015.
Hosted the first ever Canadian Rett Syndrome Symposium with 25 Canadian scientists, clinicians and provincial representatives. The symposium fostered collaboration between these individuals who have an interest in Rett syndrome and was funded by a grant from Canadian Institute of Health Research.
Coordinated the first ever National Rett Syndrome Association meeting, bringing together 6 provincial associations to discuss collaboration on current and future initiatives.
Hosted educational workshops, focused on communication and literacy strategies for individuals with Rett syndrome. These workshops were primarily funded by a grant from the Edwards Charitable Foundation.
O.R.S.A. is very proud to provide annual financial contributions towards the three Rett Syndrome Clinics in Ontario in order for them to continue to support the individuals living with Rett syndrome and acts as the representative for Rett syndrome nationally on Neurological Health Charities Canada.
As a member of O.R.S.A. you will receive access to the most up-to-date information on Rett syndrome and receive preferred rates at the bi-annual conference and/or any workshops offered. New parent/caregiver members receive a new parent package containing many great resources.
None of the above accomplishments would have been possible without your support. So please take a moment to renew your membership. If you are a family with an individual with Rett syndrome, who cannot afford the dues, you can still become members by indicating this on the form. Each and every membership matters!