The 2016 RUN4RETT was held Sunday, September 18th at Richmond Green Park, in Richmond Hill. It was a beautiful sunny day and many families and friends attended the event.
Thank you to everyone, because of you as of October 21st the total raised is over $63,000!
Thank you to all the volunteers that helped make the event the success it was. Every year the run is fortunate to have many volunteers from Dr. G. W. Williams School in Aurora. Nicole Leach organized a fantastic group of students again this year, we cannot thank you enough Nicole.
Dr. James Eubanks, Dr. John Vincent and their families also attended the run. They both shared a mic and addressed the participants with a few updates regarding research. We also saw Dr. Melissa Carter visiting with families. It is a day for visiting, sharing, remembering and caring.
Together we are building healthy tomorrows! See you at the 13th Annual RUN4RETT in 2017.
Rett Classic ~ Thank You
Last Updated: 12/08/2016 by Sherry Lawrence
Summer’s in full swing and we’d like to thank everyone for their support this year in raising over $6000 at the Rett Classic. An unseasonably hot May 28th turned out to be a great day to hit the links for over 80 people at the Greens at Renton in Simcoe. The Rett Classic is an important event that helps O.R.S.A. fund Canadian research projects, three Rett Syndrome Clinics, a resource centre, and more. Thanks to all the sponsors and participants that helped make the day a great success.
Platinum Sponsors
Delsal Technical & Environmental Services
Charles Jones Industrial Limited
Gold Sponsors
Smith & Tkaczuk Housing Management Inc.
Superior Essex
Raven Construction
The Wakonig Family
Hole Sponsors
Nissan
Legends
Endries International
Mabel’s Labels
Last Updated: 11/09/2016 by Sherry Lawrence
Step 1: As Campaign Captain (ahoy!), your first step is to visit our website, mabelslabels.com, click the “Support A Fundraiser” button located on the top of your screen, and then select your School/Organization or Camp from the drop-down list.
Step 2: Once your organization has been selected, you will be directed to a landing page that will say “YOUR ORGANIZATION NAME Welcomes You To Our Page > Click here to buy”
Step 3: Go ahead and press the pink “Click here to buy” button. Now, you have entered our website and are crediting your order to your campaign. How can you tell? Your Organization/Campaign Name will be listed on the top left of the screen.
Don’t see it? Then you aren’t in the right place. Call or email us to assist you with placing an order in support of your fundraiser.
CLICK HERE TO GO DIRECTLY TO THE ONTARIO RETT SYNDROME ASSOCIATIONS PAGE
$63,000 ~ Run4Rett 2016!
Last Updated: 12/08/2016 by Sherry Lawrence
The 2016 RUN4RETT was held Sunday, September 18th at Richmond Green Park, in Richmond Hill. It was a beautiful sunny day and many families and friends attended the event.
Thank you to everyone, because of you as of October 21st the total raised is over $63,000!
Thank you to all the volunteers that helped make the event the success it was. Every year the run is fortunate to have many volunteers from Dr. G. W. Williams School in Aurora. Nicole Leach organized a fantastic group of students again this year, we cannot thank you enough Nicole.
Dr. James Eubanks, Dr. John Vincent and their families also attended the run. They both shared a mic and addressed the participants with a few updates regarding research. We also saw Dr. Melissa Carter visiting with families. It is a day for visiting, sharing, remembering and caring.
Together we are building healthy tomorrows! See you at the 13th Annual RUN4RETT in 2017.
The Canadian Rett Syndrome Registry
Last Updated: 09/15/2017 by admin
The Canadian Rett syndrome registry is a national database for individuals diagnosed with Rett syndrome. The registry aims to enroll all living Canadian residents diagnosed with Rett syndrome. Unfortunately at this time the registry will not collect information on people with Rett syndrome who have passed away.The registry is a critical step that will organize the Canadian Rett syndrome population to attract more research opportunities to Canada with a special focus on clinical trials of potential new treatments.
Le Registre canadien du syndrome de Rett est une base de données nationale, conçue à l’intention des personnes atteintes du syndrome de Rett. Le registre s’adresse à toutes les personnes vivant au Canada, chez qui le syndrome de Rett a été diagnostiqué. Malheureusement, le registre ne recueille pas, pour le moment, de renseignements sur les personnes qui étaient atteintes du syndrome et qui sont maintenant décédées.La formation du registre est une étape très importante puisqu’elle permet de structurer les renseignements relatifs à la population atteinte du syndrome de Rett au Canada de manière à multiplier les possibilités de recherche au pays, en particulier en ce qui concerne les essais cliniques de nouveaux traitements potentiels.
Researchers studying Rett syndrome need good information to understand how the disease affects people. Scientists who want to start research studies, including those testing new treatments, can use the registry to find people who are eligible to participate in these studies. This helps to reduce study costs and makes it easier for eligible participants to find these important studies.The registry will serve to improve the quality of life of people affected by Rett syndrome by enabling research into new and improved treatments and by promoting up-to-date and consistent care across Canada.
Les chercheurs qui étudient le syndrome de Rett ont besoin de recueillir des renseignements de qualité pour comprendre comment la maladie touche les personnes atteintes. Les scientifiques qui désirent entreprendre des recherches, y compris des essais de nouveaux traitements, peuvent utiliser le registre pour trouver des personnes susceptibles d’y participer. Cela permet de réduire le coût des études, en plus d’aider d’éventuels participants à connaître l’existence de ces études importantes.Le registre vise à améliorer la qualité de vie des personnes atteintes du syndrome de Rett par la recherche de nouveaux traitements améliorés ainsi que par la promotion de soins uniformes et à jour partout au Canada.
There is no guarantee that your family will benefit from joining the Canadian Rett syndrome registry. However your participation may be important for the following reasons:
Il n’y a aucune garantie que votre famille tirera des avantages de l’inscription au Registre canadien du syndrome de Rett. Toutefois, le fait d’y participer peut aider les chercheurs à :
By clicking the link below you will access the Canadian Rett syndrome registry’s secure website where information for the registry is collected. Before you officially join the registry, detailed information about the registry will be provided for your review. After reviewing the information you will be asked to provide your consent to join the registry. Your participation is voluntary and you may choose to withdraw from the registry at any time.
En cliquant sur le lien présenté plus bas, vous accéderez au site sécurisé du Registre canadien du syndrome de Rett, là où sont recueillis les renseignements. Avant que vous puissiez faire officiellement partie du registre, on vous donnera de l’information détaillée sur le registre. Après que vous en aurez pris connaissance, on vous invitera à donner votre consentement pour participer au registre. Vous êtes tout à fait libre de vous inscrire au registre et vous pouvez décider de vous en retirer n’importe quand.
2016 Research Grant Awarded
Last Updated: 06/09/2016 by admin
$50,000 in Research Grants Awarded
London, Ontario – April 29, 2016 – The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of two $25,000 Research Grants from The Hope Fund. Read More
Last Updated: 08/25/2016 by admin
Medical Symposium
The Ontario Rett Syndrome Association is dedicated to continued medical and public education on Rett syndrome. On Friday, April 22nd, 2016 a medical symposium is being held at the Children’s Hospital of Eastern Ontario from 9:00 a.m. to 12:00 p.m. The leading physicians and researchers in the field of Rett syndrome will be speaking. Medical professionals may participate by attending the symposium or by linking in via Ontario Telemedicine Network (OTN). The general public is able to participate by using the OTN public webinar link. Families are encouraged to share this information with their child’s health care and educational teams. Information regarding the special links can be viewed on the symposium poster. Together we are building a healthier tomorrow for all those courageously living with Rett syndrome. For futher information please email 2016Conference@rett.ca. Watch the Medical Symposium Here.
Conference 2016 Q & A
Last Updated: 06/09/2016 by Sherry Lawrence
Registration Questions and Answers
Do I have to pay a registration fee for both the communication/literacy workshop and the conference?
Read More
Last Updated: 06/09/2016 by Sherry Lawrence
2016/2017 Research Grant
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
Read More
Last Updated: 06/09/2016 by Sherry Lawrence
Membership Matters 2016
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