May 13, 2013 by ref4rett
Well, it is the end of the 2012-2013 hockey season and also the end of the 2012-2013 Ref4Rett season. It was a relatively successful hockey season, I skated in the OHA Schmaltz Cup quarter-finals, which is as far as any team in our region made it.
The 2012-2013 Ref4Rett season was unbelievable, even though we got a late start (October 26, 2012) we managed to raise an extraordinary $48,166.26. This was significantly more that the $15,000 goal we set in November and could not have been possible without the support of so many individuals and groups. On top of everyone that we have previously thanked, a special thanks needs to go out to an old friend of ours who currently plays in the NHL for making a significant donation from his charity in the United States to Ref4Rett and the Ontario Rett Syndrome Association.
The plan now is to enjoy the summer and start the planning for 2013-2014 hockey season, and to start to put together our plan for the 2013-2014 Ref4Rett season.
Over the summer, I am going to take advantage of the extra time that I have at home with all my girls. Lory and I are busy planning day trips, weekend’s away and fun stuff to do so that we can have as “normal” of a life as possible. This means buying a special trailer bike so that we can go on family bike rides. The reality is that no matter how hard we try, there is no forgetting Rett and the impact that it has on Elle and our daily lives. Just a couple of weeks ago, I had to carry Elle through an indoor playground many times so that she can enjoy playing with friends at one of their birthday parties after seizures left her with full body paralysis. Regardless of the circumstances, Elle had a great time and has some great friends.
While our plan is to take the summer off from fundraising, we have had individuals contact us to show their support for Elle and Ref4Rett. The organizer of a small one day ball hockey tournament recently donated the proceeds of his tournament to Ref4Rett. We also recently learned that Wes Willard & Mike Wilkinson, have organized the Grandville Invitational Charity Golf & Potluck Barbeque for June 8th, 2013 in our neighbourhood. Proceeds will be donated to Ref4Rett. The on-going support continues to overwhelm Lory and I, and we are completely grateful for it.
Also, this summer a team of my officiating colleagues are playing in the Walter Gretzky Street Hockey Tournament for the fourth straight year and this season we are team ‘Ref4Rett’ in a continued effort to raise awareness.
We also know that it is the goal of ORSA’s Board of Directors along with Dr. Patrick McLeod to launch the Canadian Rett Syndrome Registry this year. We are so proud that all of the money raised by Ref4Rett has been allocated towards this registry. It is the hope that all those living with Rett Syndrome in Canada will register and be considered for future drug trials and we are looking forward to registering Elle.