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

Awareness Bracelets To Sell

The fundraising committee is in need of some assistance in the sale of silicone awareness bracelets.  This would involve individuals to place bracelets and collection boxes in the communities they live in, similar to the poppy drive.

It will require a maintenance of 1 visit every 1 to 2 weeks depending on sales.  This is an opportunity to spread the word and raise some funds to support the association.  Please contact Darcy Balak, O.R.S.A. ‘s Fundraising Chair,  darcy@rett.ca

Darcy will get these items out to you as quickly as possible to start raising awareness.

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

 

Click to view video

 

 

 

 

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