P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

RTT Medical Seminar Webcast

On Friday April 27th , 2012 there was a medical multidisciplinary presentation about Rett syndrome from 9:00 a.m. to 10:30 a.m. at Bloorview Holland Kids Rehabilitation Hospital.  The purpose of this educational event was to provide health professionals in Ontario with the most current information about Rett syndrome.  The presenters were  Dr. Alan Percy, Dr. Walter Kaufmann, Dr. Peter Humphreys, Dr. James Eubanks and Dr. Patrick MacLeod.  This is a group of outstanding leaders in the field on Rett syndrome.

Bloorview Holland Kids Rehabilitation Hospital provided video conferencing throughout Ontario via  Telehealth.  Eight sites connected to the video and over 35 people attended the conferencing.

O.R.S.A. sponsored this Rett syndrome educational presentation event.

Together we can make “healthier tomorrows” for all those who courageously live with Rett syndrome.

Login:  hollandb   Password:  paed15


Click to view video





Families Support the Run4Rett


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.

Whenever someone asks about Abby throughout the year, I tell them about the Run4Rett and suggest they join in the fun.  We have a growing team of supporters.  Our email list has morphed into a Team Abby blog.  We keep family and friends informed about Abby and about the Ontario Rett Syndrome Association.  As much as I can, I give specific examples about how their donations help Abby.  Our team has come to understand that donations to O.R.S.A. are valuable and helpful to us, personally.

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

Scientific RTT Meeting

The 2nd Canadian Rett Syndrome Scientific meeting was held at the Delta Meadowvale Hotel in Mississauga Ontario on Thursday April 26th, 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 2nd 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.  


2015 Membership Renew Now!

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!







O.R.S.A. Board of Directors

Who Is O.R.S.A.?

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