For our family, the Run4Rett has always been a chance to get together and show support for Abby and for all those with Rett syndrome.  When Abby was very young, I used to say, if she ever learns to walk, we’re going to have the biggest party!  After several months of intensive physiotherapy, she did learn to walk.  But by then, we were dealing with full regression and one devastating new symptom after another.  I see the annual Run4Rett as that party where we celebrate Abby year after year.

For me, the emphasis has to be on the moral support and social gathering.  When people start to learn more about Abby and get to know other families, they naturally want to also support O.R.S.A. financially.  Every year, I look forward to meeting new families and reconnecting with all the others.  Most of all, itís the day of the year when Abby wears her biggest smile.  Who doesn’t love a party?

Karen Congram

How To Host An Event

If you are interested in hosting or helping to plan an event on behalf of O.R.S.A., please browse through the three fundraising documents below. Please contact a member of the Fundraising Committee at fundraising@rett.ca or call 1-519-474-6877 if you have any questions or would like more information.

Letter of Agreement

Fundraising Proposal Form

Fundraising Guidelines

The 2^nd Canadian Rett Syndrome Scientific meeting was held at the Delta Meadowvale Hotel in Mississauga Ontario on Thursday April 26^th, 2012.  The Ontario Rett Syndrome Association hosted and sponsored this exciting meeting. O.R.S.A. is very dedicated to supporting the growth and development of Rett syndrome research. The 2^nd Canadian Rett Syndrome Scientific meeting was held the day before O.R.S.A.’s biannual conference Building Healthy Homes commences at the same location.

Over 25 top researchers and scientist from across Canada and parts of the USA attended.   Many are actively involved in Rett syndrome research today. The purpose of this meeting is to bring together a critical group of individuals from various parts of Canada to assist potential teams of researchers, knowledge-users and partners in working together to identify research questions, emerging issues and priorities that will form the basis of an application to CIHR for a Team Award.

Dr. Patrick Macleod provided an overview of the 2nd Canadian Rett Syndrome Scientific meeting at the Building Healthy Homes conference.  O.R.S.A.  is grateful for the leadership and support provided by Dr. James Eubanks and Dr. Patrick Macleod in assisting with the planning of this Rett syndrome research meeting.  

It is time for the renewal of your O.R.S.A. membership. 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!

MEMBERSHIP FORM TO DOWNLOAD AND MAIL

MEMBERSHIP 2015 CLICK HERE

Sincerely,

O.R.S.A. Board of Directors

The Ontario Rett Syndrome Association is a volunteer, not-for-profit charity.

Rett syndrome (RTT) is a neurodevelopment condition.                                                                     .

Characterized by the loss of spoken language and hand use, coupled with the development of distinctive hand stereotypies. This disorder is seen in infancy and occurs almost exclusively in females. It is usually caused by a mutation of the MECP2 gene on the X chromosome. Rett syndrome is found in all racial and ethnic groups throughout the world. It affects one in every ten thousand live female births. Early developmental milestones appear normal, but between 6-18 months of age, there is a delay or regression in development, particularly affecting speech, hand skills and gait. A hallmark of Rett syndrome is repetitive hand movements that may become almost constant while awake. Other more common medical issues encountered include epileptic seizures, muscle stiffness, osteoporosis and scoliosis. Despite its multiple handicaps, Rett syndrome is not a degenerative disease. Many individuals with Rett syndrome live long into adulthood. There is currently no cure.