News – Page 13 – Ontario Rett Syndrome Association

Last Updated: 06/09/2016 by Sherry Lawrence

RESEARCH GRANT APPLICATION PROGRAM – 2016-17

Duration: One year

Funds available: Two grants ($25,000 each)

Or may be combined for one grant of $50,000

Membership Matters 2016

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.

MAIL- Please make cheques payable to Ontario Rett Syndrome Association and mail to P.O. Box

50030 London, ON N6A 6H8 MEMBERSHIP FORM TO DOWNLOAD AND MAIL

ONLINE- Memberships and Membership Renewals at

www.rett.ca

Canadians welcomed at Rett Syndrome Clinical Trial

Last Updated: 06/09/2016 by Sherry Lawrence

Dr. Sakkubai Naidu, Principal Investigator, is initiating a double blinded placebo controlled clinical drug trial using dextromethorphan (DM) in Rett Syndrome (RTT), at the Pediatric Clinical Research Unit (PCRU) of the Johns Hopkins Hospital/Kennedy Krieger Institute, that is sponsored by the FDA and Johns Hopkins Institute for Clinical and Translational Research (ICTR)/NBRU. This study is still actively looking for participants. Canadian individuals with Rett syndrome are welcome to apply. Read More

Ring For Rett – Dec. 14th

Last Updated: 06/09/2016 by Sherry Lawrence

We would like to thank Linda Burwell for organizing the Ring for Rett Handbell Concert that is being held on December 14^th at 6:00 pm at the Carriage House Theatre (http://www.thecarriagehousetheatre.com/index.html) in Cardston, Alberta. All the proceeds from the concert will go to the Ontario Rett Syndrome Association (O.R.S.A.). If you would like more information about the concert, please contact O.R.S.A. (bhall@rett.ca) and we will forward your questions.

Carriage House Theatre

353 Main Street Cardston, Alberta Canada T0K0K0 – Phone: (403) 653-1000

May Your Holiday Season Sparkle & Shine……..

Last Updated: 06/09/2016 by Sherry Lawrence

Giving Tuesday – National Giving Day

Last Updated: 12/08/2016 by Sherry Lawrence

Giving Tuesday is coming up on Tuesday, November 29th, 2016.

On giving Tuesday all donations to O.R.S.A. will be directed to The Hope Fund. This fund exists solely for research and 100% of all these dollars will go to Rett syndrome research to find a cure and/or treatment for Rett syndrome.

Please share this link with friends who may be willing to make a donation to research:

http://givingtuesday.ca/partners/Ontario-rett-syndrome-association#.VIYOP3arTrd

Red Deer, Alberta FUNraising!

Last Updated: 06/09/2016 by Sherry Lawrence

Rise Against Rett Syndrome

Thank you to the Hollman family for supporting all those living with this rare disorder and making a difference by ‘Building Healthy Tomorrows’. Fundraising does not need to be complicated, if your event educates one person about Rett syndrome then it should be considered a success! If you are interested in creating or supporting a fundraising event, please do not hesitate to contact fundraising@rett.ca for more information.

2016 O.R.S.A. Conference

Last Updated: 06/09/2016 by Sherry Lawrence

SAVE THE DATE: April 22nd, 23rd, 24th, 2016

LOCATION: Ottawa Conference/Event Centre, Ottawa, Ontario

Last Updated: 06/09/2016 by Sherry Lawrence

POND Network Includes Rett Syndrome

POND stands for the Province of Ontario Neurodevelopmental Network. We are proud to announce that Rett syndrome has been added to the conditions involved in this network. This is an opportunity for families who have a child with Rett syndrome to participate in a new research program. Read More