Knight of Columbus Charity Breakfast

img_20170205_1146568If you would like to support Ref4Rett and enjoy some good food, join us at the Knights of Columbus Charity Breakfast.

Breakfast is being served from 9:00 am to 12:00 pm at 12 Catharine Avenue in Brantford. The cost is $8.00 per adult and $4.00 for children under 10.


Invite your friends and family. Everyone’s welcome!


6th Annual Ref4Rett Event Another Huge Success!!

With record breaking attendance of 649 people, last nights 6th Annual Ref4Rett event, was an amazing night. Thank you to everyone who came out to make this a truly spectacular night!

A special thank you to Todd Wood and the Paris Mounties for allowing us to be a part of their last regular season game! What a way to end the night – a win in overtime!

Thank you to both Paris Alumni Teams that supported this years event and who helped to put a HUGE smile on Elle’s face with a team photo and fist bumps.

Thank you to all of our volunteers, without whom, this night wouldn’t have been possible. Thank you to our MC, Andy Thibodeau. Thank you to Cindy Hefferan, from Now & Always, who provided the linens for the hall. Thank you to everyone who donated an item to the silent auction and to all of our sponsors.

Thank you to our Paris Senior IP players for an entertaining game during the first intermission. Looks like we could have some future Mounties in the making!

We are so proud to report that this years event has raised over $21,000!!!! All of these funds will be directed towards the Ontario Rett Syndrome Association’s Hope Fund – which is dedicated to Canadian Rett syndrome research.


Photos Courtesy of Jocelyn Lambie

Five Years….

Five years ago today we learned Elle’s diagnosis.  As we sat down to right this post and reflect on the last year, one thing that stuck us is that it is hard to remember what life was like before Rett syndrome became a member of our family.

What we realized is that the last five years have brought us the opportunity to meet some really amazing people – who we likely wouldn’t have otherwise met.  The last five years have also helped us to truly appreciate the goodness in humanity and to appreciate all of the people who we are blessed to have in our lives.  Rett syndrome has taught us in a very special way to appreciate what we have and can achieve and not to focus on what we don’t have or what we wish we had.  It has provided us with a different and better perspective of life.

So this year our focus is not about what we can and can’t do, or what Elle can and can’t do, but more about just living.  Although we could write pages about our challenges and our worries, or share with you the successes and  achievements of this past year – we won’t.  What we will do is acknowledge that we all experience worries and celebrate successes; they might just be different.    This year we just want to leave you with this –   Rett syndrome is a member of our family, with whom we can’t remember living without.  While we aren’t giving up on finding a cure or a treatment, we have found our “normal” and just work on making the best of every day.

As in the past five years, we continue to receive tremendous support from the Paris Mounties.  On January 27th, 2018, we will be hosting the 6th Annual Ref4Rett Event at the Brant Sports Complex in Paris.   This year’s event is set to be another great event and will once again feature two hockey games.  The first game will be an alumni game between the 1996 Championship Paris Mounties Alumni and the 2014 Championship Paris Mounties Alumni.  The second game will be the last regular season game between the Paris Mounties and the Ayr Centennials.  Tickets to the event are $8 each and include admission to both games and can be purchased at the door.   Along with the great hockey, there will also be a silent auction.  Our goal this year is to raise $40,000.00 for the Ontario Rett Syndrome Association’s (O.R.S.A.) Hope Fund which is dedicated to Rett syndrome research.  Check out our website (, like us on Facebook or follow us on Twitter for more details as they become available.