Ref4Rett 2016 an Amazing Success!!!

Ref4Rett 2016 was another incredibly successful night, with a record breaking 774 people in attendance!!!! Truly amazing.

It is hard to put into words the feeling that we get when we see the Brant Sport Complex full to the brim with so many people who turned out to watch some great hockey and support Elle and Ref4Rett. We work so hard to pull this event together and when we sat in that arena on Saturday night and looked around, it left us feeling breathless and once again so proud to be a part of this community.

The 2015-2016 Ref4Rett season has raised over $25,000 all in support of Rett syndrome research and we couldn’t have done it without of the support of all of the amazing people in this community.

Thank you to Todd Wood and all of his support. The truth is that without his support we wouldn’t have the platform to even host such an event. To our sponsors: Legends Taphouse and Grill, Brantford Nissan, Canadian Home Inspection Services – Stewart MacNamara, Canadian Tire Paris, and Masonite. Thank you to Cindy Hefferan from Now & Always Special Event and Wedding Decor for donating all of the linens so that we could make the room look beautiful. Thank you to Kara Wilson from Wilson Sport Photography for capturing all of the incredible moments of the night. Thank you to the Paris Mounties Alumni and the Ayr Centennials Alumni for agreeing to give of their time and raise money to be a part of this event. To our all of our volunteers, who without, we definitely couldn’t have made the night happen! Thank you to everyone who donated an item to the silent auction or who made a monetary donation. Thank you to Molly Gibbons for her amazing performance of the national anthem. And last, but definitely not least, to all of the people who attended the event – none of our success could have been possible without your attendance.

A very special thank you Elle’s Rett sister, Isabela Campbell, and her parents Scott and Holanda, for making the long drive to Paris to share the evening with us.

Since October 26, 2012 when Elle was diagnosed, we have had to learn to live our lives with hope and faith, and the on-going expression of support really does help to fuel our hearts and gives us the strength to continue on this journey.

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Three Years Later…..

Elle - 2015

Three years….

Some days it is hard to believe that it has only been three years since we heard those dreaded words… “Elle has tested positive for Rett syndrome” . ..yet at times, it feels like an eternity.  An eternity of uncertainty, second guessing and hoping.  Days when we feel like we understand Rett syndrome and how it impacts Elle, and other days where we feel like we are at it’s mercy having no clue about what we are doing, what is going on, who to call for help and if we are doing enough for her.   Feeling lost in the world of therapists, diagnostic testing and medical appointments, and hoping that we haven’t missed something.  Some days, despite the amazing people that we have around us, the loneliness of parenting such a special child is overwhelming.

This has been another year of ups and downs.  A year of letting down our guard to just enjoy life day to day, and then being terrified when the seizures are out of control and when her ability to walk was once again compromised during the summer.  Another year of being grateful for everything that we have, yet a times hating that our lives have been impacted by Rett syndrome.  Walking the line of self pity, but then feeling guilty for even letting our minds go there.  Raising a daughter with Rett syndrome is both a blessing and a challenge.  A challenge for the obvious reasons, and a blessing because we never knew the true depths of victory and joy until we stood witness to Elle’s persistence in overcoming those challenges.

Raising a special needs child has changed our lives. We have been challenged and pushed beyond our limits in raising Elle, but we have also grown tremendously, and developed soft hearts and empathy for others in a way that we never would have without her.  Raising Elle has shattered all of our preconceived expectations of the “should bes” – those things that we once idolized and built our lives around – and put something else at the core of our lives: love, understanding and hope.

Knowing the true potential locked within Elle and all of the other individuals living with Rett syndrome, is what continues to give us the strength and determination to continue on our journey to raise awareness and funds for on-going research.

There continues to be so much hope in the world of Rett syndrome as there are numerous research projects and clinical trials happening at independent labs and major universities thought out the world, including in Canada, and as close to home as Toronto.  All of this research is aimed at improving the day to day lives of individuals with Rett syndrome, and with ultimate hope of one day finding a cure.

As in the past three years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C).  On January 30, 2016, we will be hosting the 4th 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, or by emailing us at ref4rett@gmail.com.  Along with the great hockey, there will also be a silent auction.  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 .

Thank you for the continued support, well wishes, prayers and hope, they are all so truly appreciated.

2nd Annual Ref4Rett Event Update!!

Please join us for the 2nd Annual Ref4Rett Event on Saturday, February 1 at the Brant Sports Complex.

It is set to be a night of great fun and great hockey!!

The Paris Mounties will be having an Alumni Game from 5:30 – 7 pm.

Our MC for the evening is Ed MacMahon from Jewel 92 (www.jewel92.com).

The World’s Greatest Hockey Dad, Mr. Walter Gretzky, will be signing autographs from 6:30 – 7:30 pm .

There will be live entertainment, featuring Joshua David Peidl, from 6:00 to 7:30 pm (http://www.reverbnation.com/joshpeidl) .

The Paris Mounties last regular season game against the Burford Bulldogs will begin at 7:30 pm with a ceremonial puck drop by our very own, Elle Morton.

Our Silent Auction now has well over 100 great items and during the first intermission, 2 lucky individuals will be shooting to win a 2014 Nissan Altima courtesy of Brantford Nissan.

Hope to see you there!!!

 

2014 Ref4Rett Poster

2013-14 Ref4Rett Season

As the end of summer quickly approaches, Elle has just finished her first day of school and hockey season has started.  Elle is back in Mrs. D’s class for another year of Kindergarten, which she is really excited about.  We want to thank the Youth Ambassador’s at Scared Heart for their frozen smoothee fundraiser in June.  The proceeds of their fundraiser were donated to the Ontario Rett Syndrome Association (O.R.S.A.) in honour of Elle.

As I start to gear up for another officiating season, we are planning on continuing Ref4Rett for the 2013-2014 season.  We had such a successful 2012/13 fundraising season, and fundraising for Rett Syndrome research continues to remain a cause that is so dear to Lory and I.  This means that I will be donating $20 from every game that I officiate this season in the O.HA. to O.R.S.A..  We are also planning on having the 2nd Annual Ref4Rett Fundraising Event with the Paris Mounties at their last regular season home game on February 1st, 2014 against the Burford Bulldogs.  We are hoping that a combination of donations, sponsorships and items sold at our Silent Auction to exceed the $48,166 that we raised for research last season.

Lory and I are just in the process of preparing our application to O.R.S.A. and I am officiating some exhibition games this week.  So the fundraising season begins!!

Keep up-to-date on what is happening with Ref4Rett by following our blog or on Twitter or liking us on Facebook.  Thank you for all the support that everyone has shown us as we continue our efforts to raise awareness and hope to one day find a cure for Rett Syndrome.

Paris Mounties Supporting Event

On January 26, 2013 the Paris Mounties will be supporting Ref4Rett and the Ontario Rett Syndrome Association (O.R.S.A.) at their last regular season home game against the Dundas Blues.  Game time is 7:30 at the Brant Sports Complex in Paris, ON.

This event will consist of a raffle and a silent auction.  We are currently inquiring for event sponsorship, silent auction opportunities or donations.  The goal of the event is to raise $15,000.  I have personally made the commitment to donate $20 for every game that I officiate for the rest of my career to O.R.S.A.

Event Sponsorships are limited to 10 corporations at a cost of $300.00 each.  With an event sponsorship, you will receive and direct link from our website (www.ref4rett.com) including a logo, advertising on a pre-event posters (minimum of 50), an ad in the game day brochure, announcements on the Public Address system and additional social media exposure on Facebook and Twitter.

Silent Auction sponsors are also available, we will have 3 spots available at a $300 price point and 5 spots available at a $200 price point and the option to supply an item for the silent auction with a minimum value of $50.  With this sponsorship, you will receive a link on the website, mention at the silent auction table and in the game day brochure and additional social media exposure on Facebook and Twitter.  Please check the event tab on the website for silent auction items and a list of our corporate sponsors.