We are currently selling raffle tickets for one of two chances to shoot to win a 2014 Nissan Altima from Brantford Nissan. Tickets are available for $5.00 each or 3 for $10.00. 
The winners will be drawn on January 31st at 8:00pm at Legends Tap & Grill. Winners will be contacted immediately following the draw.

On February 1st, 2014, during the 2014 Ref4Rett Event at the Paris Mounties last regular season hockey game against the Burford Bulldogs, the two winners will have the opportunity to shoot for the 2014 Nissan Altima. 

Please contact ref4rett@gmail.com if interested in purchasing tickets. 

Contest Details: Each Participant will be allowed only one (1) Attempt. No practice or warm-up Attempts will be permitted. Participants are not permitted, under any circumstances, to transfer their participation in the Insured Contest to another individual. The Participant must show valid photo identification prior to their Attempt and must not be notified of the type of shot they will be attempting or the type of Insured Contest they are participating in more than twenty-four (24) hours prior to the Insured Contest. The first Participant, who makes a successful Attempt, will be declared the winning Participant.

Check out the “Event” tab and see the first look at our preliminary list of silent auction items for the 2nd Annual Ref4Rett event on February 1, 2014. (https://ref4rett.com/event/)

It is a surreal feeling this morning, when we reflect on what the 1999 Toronto Titans did for Ref4Rett.  Despite the treacherous driving conditions and blowing snow, everyone arrived at the rink with warm hearts and wanting to give back; all gathering for one cause – Rett Syndrome.

From the coaching staff, to the players, to parents, volunteers and the many fans, everyone came together to cheer on the 1999s versus the Officials.  In a fun filled, high scoring affair, with great officiating (one-sided) by Darcy Tucker and Patrick Flatley, and inspiring coaching from Scott Morrison, the Officials were able to tie the top ranked 1999 AAA Bantam team in the province,  keeping coach Morrison’s perfect coaching record at 0-0-1!

The event highlighted by a presentation of a cheque in the amount of $18,000, which was rounded up to $20,000, by the generosity of the Titan and Wolverine organizations.  All of these funds will be donated to O.R.S.A. and will be specifically dedicated towards research.

A very special thank you to everyone who made this day a success, but in particular to Sharlene Israel, a mother and woman who heard about our cause, read our story, and in seconds made her vision for this fundraising day a reality.  Her tireless work, advocacy and enthusiasm for the cause is truly inspiring.  THANK YOU!!!!!

Thank you as well to the guys who played for the Officials team.  We appreciate the effort made to be there and be a part of a very special game (that drive was horrible), and also for all your continued support to our family and Ref4Rett.

Not only was this a fun filled and emotional day for us as parents, but particularly heart-warming to see the smiles that it brought to the faces our special Rett angels who were present at the game;  Elle and Rachel .   They enjoyed the game, but we think the highlight for them was the opportunity to flirt with the boys in a pregame visit!

We’ve heard that there was a new clip on CTV new last night, but have yet to find it.  If anyone has it, please send it to us so that we can share it.  There were also many, many photos taken, which we will also share once we receive them.

We would like to send a big thank you to the staff and students at Saint Michael Catholic High School in Niagara Falls who donated a part of the proceeds from their “Staff/Student Pastoral Out of Uniform Day” to Ref4Rett.

Special mention goes out to Mrs. Janet Hart (Lory’s sister) who has been a champion for Ref4Rett in her community and shared our story with her school.
The love and support that we have experienced from many different communities continue to touch our hearts.

Thank you!!

www.saintmichaelmustangs.com

It is so hard to believe that it has been a year since I first heard those words: “Elle has tested positive for Rett Syndrome”. I remember the moment clearly, the room seemed to go silent, the doctor was talking but I could no longer hear his words, the tears ran down my face as I knew that this moment would change my life forever…..

The last year has been a bit of a whirl wind for me. Returning back to work after a 14 month maternity leave, trying to juggle the continued multiple appointments for Elle, managing the on-going debilitating seizures that plague and leave her without the ability to walk for hours and sometimes days following, and trying our hardest to live as “normal” a life as possible. Watching our girls grow is the single most fulfilling and rewarding part of my life, however seeing Paige catch up to Elle in her development reminds me of the struggles Elle will always face.  Rett Syndrome has become a part of my every waking minute and as much as I want to forget that it exists, it has a habit of reminding me that, at least for now, it will never go away.

The grief and loss that I felt upon hearing the diagnosis has changed over the past year. The “why Elle” has changed to “don’t” – Don’t let her have more seizures. Don’t let her lose her ability to walk.  Don’t let her lose her ability to talk.  Don’t let her lose her ability to eat.  Don’t let her develop scoliosis. Don’t let her die suddenly in her sleep as do so many girls with Rett. Don’t let anything happen to Kevin or I because we have to be able to take care of her. Don’t let her die young because I can’t bear to lose her, but don’t let her outlive me, because who will take care of her when I am gone?

It is because of these “don’ts” that both my husband and I are determined to continue to both raise awareness and funds to support on-going research.  And it is for that reason that I reach out to you today on the anniversary of our diagnosis.   Ref4Rett 2012/13 was able to raise over $48,000 in support of the Ontario Rett Syndrome Association (O.R.S.A), all of which was dedicated to research, specifically towards the development of a National Rett Syndrome Registry. The establishment of the registry is important to families across Canada because future drug trials can only be implemented in Canada through an approved registry. Exciting research is happening daily and scientists at the Toronto Western Research Institute at the University Health Network have revealed restored function in the Rett syndrome mouse model across a broad range of symptoms. The study was led by Dr. James H. Eubanks, PhD and recently published in Human Molecular Genetics (http://www.ncbi.nlm.nih.gov/pubmed/24009314). These remarkable findings provide further evidence that a treatment or cure for Rett syndrome is within reach. 

Join us as we continue on our journey towards making Rett Syndrome a thing of the past!

As we approach the one year anniversary of Elle’s diagnose and in that October is Rett Awareness month, we felt that it is the perfect time to launch the 2013-14 fundraising season, which will feature our signature event on February 1, 2014.   The Paris Mounties will be supporting the 2^nd Annual Ref4Rett Event and the Ontario Rett Syndrome Association (O.R.S.A.) at their last regular season home game against the Burford Bulldogs. Game time is 7:30 at the Brant Sports Complex in Paris, ON. This event will consist of a raffle and a silent auction, with a goal of raising $30,000.00.  All funds raised through donations, sponsors and the silent auction will be dedicated to research, specifically towards the continued development of a National Registry for Rett Syndrome. The establishment of the registry is important to families across Canada because future drug trials can only be implemented in Canada if there is an approved registry.

In order for this event to be successful and to help us realize our goal, we are looking for event sponsorships, silent auction items or donations of any amount.   We can be contacted at ref4rett@gmail.com for more information.  You can also follow this link to donate now, http://www.rett.ca/index.php/shop/ref4rett/. 

Thank you kindly in advance for your support in this endeavour.