Thank you for your support of the Ontario Rett Syndrome Association (O.R.S.A.) in 2015. It was a year of significant accomplishments that could not have happened without the support of so many.
In 2015, O.R.S.A. had several major accomplishments, all of which contribute towards an effort 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.
These include but are not limited to:
- The ongoing maintenance and hosting requirements of 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. O.R.S.A. is currently the only association maintaining the Registry.
- A $50,000 Research Grant was awarded to a joint grant application from Dr. Juan Ausio, University of Victoria, BC and Dr. John Vincent, University of Toronto, ON from the Hope Fund. This is the largest grant ever from a Rett association in Canada.
- Continued growth of the Hope Fund. This fund exists solely for Rett syndrome research. 100% of all these dollars will go to finding a cure and/or treatment for Rett syndrome. The Hope Fund currently has over $100,000 in it.
- Continued annual financial contributions towards the three Rett Syndrome Clinics in Ontario in order for them to continue to provide valuable care and support for individuals living with Rett syndrome.
- A significant amount of time and effort in creating a succession plan to ensure that O.R.S.A. continues to have the necessary skills and experiences to fill key roles in the future.
- Preparation for the 2016 O.R.S.A. Conference that is scheduled for April 22nd to the 24th in Ottawa, Ontario.
None of these accomplishments would have been possible without the efforts the volunteer Board of Directors at O.R.S.A. and the continued partnership with so many people. We truly appreciate the love and support and would like to wish everyone a happy new year.
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