Representing in Zanzibar!!

Looking great on the beach in Zanzibar in a Ref4Rett t-shirt.

Thanks to Serafina for bringing Rett Syndrome awareness to Africa!

Serafina

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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 (www.ref4rett.com), like us on Facebook or follow us on Twitter for more details as they become available.

Knights of Columbus Breakfast a Huge Success!!!

This mornings Knights of Columbus breakfast was a huge success with an attendance of 290 people!!!

Thank you to the Knights of Columbus Brantford volunteers for the great food, to all of our volunteers (Janine, Ilah, Michelle, Mark, Jen, Adrian, Joey, Jacob, Cassandra and Nyah) for keeping things moving and clean, and to everyone who attended for helping to make this such a success.

A very special thank you to Bonnie for putting together the raffle “basket”.

5th Annual Ref4Rett Event a Huge Success!!!!

The 5th Annual Ref4Rett was again another incredibly successful night, with over 500 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 special community.

To date, the 2016-2017 Ref4Rett season has raised over $25,000 and we are not done yet with the Knight of Columbus breakfast on February 5th. All of these funds are in support of Rett syndrome research in Canada and we couldn’t have done it without the support of all of the amazing people in this community.

Thank you to Todd Wood and the Paris Mounties for all of their support. The truth is that without Todd’s support we wouldn’t have the platform to even host such an event. To our event sponsors: Golden Windows Limited and Legends Taphouse and Grill and our additional sponsors Brantford Nissan, Canadian Home Inspection Services – Stewart MacNamara, Canadian Tire Paris, Kidtastic Adventures 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 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. Thank you to Walter Gretzky for his surprise appearance at our event – bringing a smile to all those who met him. A special thanks to Courtney Hall for capturing many images of the night for us and to Tanya Taylor from Censational Photography for capturing moments from the night that we can’t wait to see (more photos to come). 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. 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 sisters, Anna, Olivia and Marissa, for sharing this special night with us.

Since Elle’s diagnosis on October 26, 2012, we have learned 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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