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

The Voice of Rett Syndrome

Just released February 10th, 2013.

This video was produced in recognition of 1,000 fans on the Ontario Rett Syndrome Association Facebook page. It is dedicated to all the courageous people living with Rett syndrome. – created at http://animoto.com

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

 

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Families Support the Run4Rett

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.