And the winners are….

1st Prize: Anne Murchie

2nd Prize: Charlie Sayles

We are very pleased to announce that the Knights of Columbus have decided to sponsor Ref4Rett and the Ontario Rett Syndrome Association at their upcoming charity breakfast which is being held on Sunday February 5^th, 2017.  We are looking for 6-8 volunteers to assist us in serving, clearing and cleaning dishes at the event.  If you can assist, please let us know by email (ref4rett@gmail.com) or Facebook, as soon as possible.  These hours could count towards a student’s volunteer hours.

If you are not able to assist but would like to support us and enjoy some good food, 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.  ALL YOU CAN EAT! Invite your friends and family. Everyone’s welcome!

ON SALE NOW!!!

Tickets for the Ref4Rett Raffle are now available.

If you are interested in selling tickets or purchasing some, please contact us.

Four years ago today Rett syndrome became a permanent member of our family.  As we prepared to write this post, the word that kept coming to mind was acceptance.  Acceptance of what Rett syndrome means for Elle and our family and a feeling that everything is going to be okay.  Not a “lie down and just accept this” type of acceptance, because we are always going to fight against Rett, but an acceptance of living life in such a way that allows us to integrate Rett syndrome.

Another year filled with ups and downs, but through it all, our goal has been to provide Elle with every opportunity to live life to the fullest and to make any necessary accommodation as silently as possible so that things feel as normal as possible to Elle.  An acceptance that perhaps our home, our vacations and even our shopping trips will look a little different, but that it is all okay.

An acceptance that Elle will likely not get to do many of those things that other “normal” 9 year old do and that is okay.  By nine, most kids have a well established circle of friends, and doing all those things that come with those friendships.   For Elle, we know that there are no longer birthday party invitations, no play dates, no sleepovers, and there is no girl talk, but what we also know is that she is a bright light in the lives of all those that she meets.  We know that she is surrounded by a village of people who love and support her.

A week ago, someone very special to Elle told us that “Elle is a teacher to those around her”.  She teaches determination and perseverance, and always does it with a smile.  Despite whatever may be happening, Elle fights to meet whatever goal she has in mind.  Elle has taught us to be fighters and never to give up regardless of the obstalce, and it is her strength that drives us on our journey to continue to raise awareness and funds for on-going research.

With the continued support from the Paris Mounties (OHA Jr.C), on January 28, 2017, we will be hosting the 5th Annual Ref4Rett Event at the Brant Sports Complex in Paris.  This year’s event is set to be another great event and will feature two hockey games.  The first game will be an alumni game between the Paris Mounties Alumni and the Ayr Centennial 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.  Tickets are available at the following locations: Legends Tap House & Grill 1084 Rest Acres Road, Paris, during the Paris Mounties Home Games at the Brant Sports Complex, by emailing us at ref4rett@gmail.com or at the door the night of the event.  Along with the great hockey, there will also be a silent auction and a raffle draw.  Our goal this year is to raise $30,000.00 for the Ontario Rett Syndrome Association’s (O.R.S.A.) Hope Fund which is dedicated to Rett syndrome research.

As we plan for our event, we are currently looking for sponsors, silent auction items, or volunteers to work at the event.  If you or someone you know is interested in any of these, please contact us.  We’d also ask that any Alumni interested in playing that night, contact us for further information.

If you are interested to learn more about our journey or to make a donation you can visit our website www.ref4rett.com and you can also like us on Facebook or follow us on Twitter.  To learn more about Rett syndrome and O.R.S.A. you can visit www.rett.ca .

In honour of Rett Syndrome Awareness month we created a short video to show Elle’s development over the last nine years.

Through the good and bad, Elle remains determined and has a true love for life. Enjoy!

Please help us to continue to raise awareness and share this video.

https://www.facebook.com/Ref4Rett/

For those of you who know Elle, you will know how much she loves going to church every Sunday and in particular her true fondness for our priest, Father Michael Bennett.

Today was a particularly exciting Sunday for Elle, as she celebrated her First Holy Communion. It was heart warming to see how truly excited she was to be receiving Jesus into her heart.

A special thank you to all of our family, school friends and fellow parishioners who were able to witness her very special day.

When I decided that January 27^th, 2016 was going to be my last game officiating on the Ontario Hockey Association, it was a pretty easy decision to go back to Strathroy for my last game.  I have so many memories in the West Middlesex Memorial Arena growing up as both a hockey player, a coach and a referee that it was only fitting.  I played my minor hockey there, my only Jr. B hockey game there sitting on the bench for the Alymer Aces’ as a backup goalie and I got to referee my first OHA game there one snowy night in 2004.  I didn’t tell many people that I had made the decision to retire from the OHA because I personally did not think that it was a big deal.

However, thanks to so many people, you made it feel like it was a big deal.  I need to start by thanking my wife, Lory, for all that she did to raise awareness of the night but also for the support over the years as an official.  I can’t count the number of nights that I walked in the door from work, grabbed my hockey bag and a warm meal that she had made, and was off to some rink in Southern Ontario.  Without her support I would not have been able to skate as long as I did.

The Strathroy Rockets, truly made the night special for me and I truly appreciate what they did for me.  With the help of Mike Brooks, Gary Dodds and so many others, my officiating crew felt like true professionals from the moment we walked into the rink.  My family, friends and fellow officials were taken care of and my girls were treated like royalty.

Thank you to the Ontario Hockey Association for the years of service award, to the Rockets organization for the framed jersey and the $500 donation to Ref4Rett, and the Rockets players for their $150 donation from their team fines.

A very special thanks the Brantford officials, who are like family to me, for the framed picture, the $500 donation to Ref4Rett and for making the trip to Strathroy to watch the game and celebrating my retirement with me.

While there were some mixed emotions, in the end, I have a significant feeling of accomplishment and pride!  I enjoyed the moment and look forward to the next chapter of my life where I won’t be making a difference on the ice, but hope to be making a significant difference in the life’s of so many people impacted by Rett syndrome.

Kevin’s passion for hockey is long-standing and dates back to his childhood when he began playing hockey at the age of 5.  He was a goalie and played in the Strathroy Minor Hockey Association until he was signed by the North Middlesex Stars (OHA Jr D) as a 16 year old and completed his OHA career with the Belmont Bombers (OHA Jr D).

At the age of 15, he decided to try his hand at Officiating  and joined the Ontario Minor Hockey Association in Strathroy, where he continued to Officiate until 2006.   The more games he Officiated the more he loved the role and he continued to push himself to achieve bigger and better opportunities.  While attending the University of Windsor he expanded his Officiating career to additional leagues including the Minor Hockey Alliance of Ontario, the Ontario Women’s Hockey Association and the Ontario University Athletics.  Upon completing University, he returned to Strathroy and was hired by the Ontario Hockey Association as a linesman at the start of the 2002-2003 season in the Sarnia area.  On December 19, 2004, Kevin refereed his first Jr B game in Strathroy when a snow storm left the scheduled Referee unable to make it to the game, and in 2006 he moved to the Brantford area where he continued to referee.

In 2005, just newly married, he was offered a position to officiate in the East Coast Hockey League, which he turned down in order to pursue his Masters of Business Administration and to begin a family.

Kevin has continued to excel as an official and has often been selected to officiate various OHMA championship Series and also a couple of Ontario Hockey Federation Championships.  He is currently one of over 200 Level 5 (of 6 levels) Officials with Hockey Canada and has officiated in multiple Cherrey Cup Finals (OHA Midwestern Jr B Championship) and regularly officiates in the Schmalz Cup (OHA Jr C Championship).

On Friday June 6, 2014, Kevin was awarded the Jack Clancy Award.  This award was created in 1980, in the memory of OHA Referee, Supervisor and Director, Jack Clancy, and is awarded annually to the OHA official who demonstrates a dedicated and responsible attitude towards his duties and the Association, during a playing season.

In October 2012, Kevin’s oldest daughter, Elle, was diagnosed with Rett Syndrome, a rare neuro-developmental disorder.    In order to help him manage the feeling associated with such a devastating diagnosis, as well as away to try to “do something”, Kevin used his passion for hockey, specifically for Officiating and his love for Elle and created; Ref4Rett.   Ref4Rett initially began as a commitment from Kevin to donate $20.00 from each game he Officiates to the Ontario Rett Syndrome Association, but it quickly became something so much bigger and is now a full fledged fundraising initiative in support of the Ontario Rett Syndrome Association (ORSA), in hopes of raising awareness and funds to find a cure for his daughter Elle and other individuals living with Rett Syndrome.

Through Kevin’s dedication along with the outstanding support of the Midwestern Junior C Leagues, the fans and so many caring people with whom he has had the fortune of connecting with, to date, Ref4Rett has raised over $160,000, all of which has been dedicated to research for Rett Syndrome.

On reflecting back on his career, Kevin would say that he is very proud of his accomplishments on the ice.  In leaving the arena each night, his goal was that neither the players nor the spectators remembered who the referee was.  It was never his ‘show’ and he never wanted the attention on the ice; his job was to call a fair game.  Over the years, Kevin officiated a lot of hockey.  He was able to develop friendships with many other officials that went well beyond the game, and was also able to earn the respect of most players, coaches, management and spectators along the way.

It is for this reason, that as Kevin prepares to hang up his Officiating skates in order to spend more time focused on his family, Ref4Rett and as the President-Elect of ORSA, that we feel that it is so important to honour him and support him as he skates his last game on Saturday, February 27th, 2016 in Strathroy when the Strathroy Rockets take on the Chatham Maroons in their last regular season game.