Category: Rett Syndrome

7th Annual Ref4Rett

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Last night the 7th Annual Ref4Rett event was held at the Brant Sports Complex and it proved to be another amazing night!!!

A special thank you to Todd Wood and the Paris Mounties for allowing us to be a part of their last regular season game! What a way to end the night – with two quick come back goals to take the game into overtime.

Thank you to the Paris Alumni players that supported this years event and who helped to put a smile the faces of Elle and her two Rett sisters, Isabella and Cuiliu.

Thank you to all of our volunteers, without whom, this night wouldn’t have been possible. Thank you to our MC, Andy Thibodeau. Thank you to Cindy Hefferan, from Now & Always, who provided the linens for the hall. Thank you to everyone who donated an item to the silent auction and to all of our sponsors. The event is truly a culmination of everyone coming together for one cause.

Thank you to our Paris Tyke 2 players for an entertaining game during the first intermission. It looks like we could have some future Mounties in the making!

We are so proud to report that this years event has raised over $20,000!!!! All of these funds will be directed towards the Ontario Rett Syndrome Association’s Hope Fund – which is dedicated to Canadian Rett syndrome research.

Thank you to everyone who came out to support us and celebrate what is a magical night for our family! 💜💜💜

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Todd Wood Awarded the ORSA Spirit Award

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On Monday, May 7, 2018, Paris Mounties owner, Todd Wood, was recognized for his years of support of Ref4Rett and the Ontario Rett Syndrome Association.  Todd Wood was presented with the ‘Spirit Award’ at the Mounties banquet.

Check it out on 519 Sports Online #PJHL#Mounties https://www.youtube.com/watch?v=ubuT3FhR3NI

2015 Research Grant Awarded

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We are very proud to share with you that because of the support of that we have received the Ontario Rett Syndrome Association was able to fund a $50,000 Research Grant through the Hope Fund. It was just announced and was the largest grant in the history of O.R.S.A.! It hopefully moves us one step closer to finding a cure for Rett syndrome!  Please follow this link to see the details of the grant, www.rett.ca/50000-research-grant-awarded/

The Rett Effect Part II

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It’s been just over a month since Elle was diagnosed with Rett Syndrome and it’s interesting that although she is still the same kid that she was on October 25th , it feels like so much about our lives has changed.

When we received this diagnosis our hearts were filled with grief and sadness – that although our daughter was still here, we had lost the dreams of what she may one day become and of having that so called “normal” life.   I have to be completely honest that during the first few weeks, both Lory and I shed a lot of tears.  More tears that I ever imagined were possible and at the most random times over what most people would consider insignificance events.  I cried alone in my car driving home from work, I cried in Lory’s arms and I cried watching a comedy as a father walked his daughter down the aisle, something that I will probably never experience with Elle.  Those tears turned to fear on November 21st, when Elle experience the most terrifying seizures that we have ever experienced with her.  I cannot tell you how terrifying it is to watch your little girl have a seizure that lasts over 8 minutes as you are comforting her and calling 911 at the same time.  Those were the longest 8 minutes of my life because I felt completely helpless.  She experienced seizure after seizure for a total of 10 during the night and into the early morning.  Not only does she have to endure the toll that the seizures take on her little body, but after the seizures she generally experiences full body paralysis which turns her body into a rag doll.  In reading about Rett, they talk about periods of regression; not knowing if this was that time that she would not regain her ability to walk or use her body again was terrifying.  Watching her a week following the seizures still struggling to get her body to do what she wanted it to and getting frustrated by this.  Fortunately she eventually returned to her pre-seizure self, adapting to the medication change and just hoping that the anti-seizure medication helps to avoid another night spent in hospital, another day of not being able to use her body, another week of Lory and I being terrified about whether or not our little girl would be the same again.  Then December 5th, it happens again………….

Thank You

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This Ref4Rett journey started just under a month ago, and I have to say that I am so incredibly overwhelmed at the outpouring of support for both myself, my family and for Ref4Rett.

I need to thank the members of ORSA for jumping on board and fully supporting the Ref4Rett initiative…I really wouldn’t have been able to pull this together so quickly without their support.

Thank you to our family, friends and colleagues who have all been so supportive – emotionally, through donations and by helping to spread the word about this most worthy cause.

The most surprising in all of this, are those acts of kindness from perfect strangers, who with so much compassion, are willing to go above and beyond to help me achieve my goal.

With just under two months left until game day, I’m hoping that everyone can continue to help to spread the word and raise awareness.  Remember you can always “like” Ref4Rett on Facebook or follow me on Twitter.

Thanks again!!   Your love, compassion and generosity do not go unnoticed.

UNLESS

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Below is a blog posted by another parent who has a daughter with Rett Syndrome, I could not help but post it here because these are my exact thoughts and feelings, one month after Elle has been diagnosed.  I could not have said it any better.

“Unless – There’s so much hope, potential, and possibility contained in that word. But also risk and uncertainty.  Unless we try, we’ll never know if it can be done. Unless someone’s prepared to stick their neck out, nothing will ever change. Unless we do it, who will?

For as long as I’ve known about Rett, I’ve been waging a personal battle with the whole business of ‘acceptance’.  Initially it was a simple case of struggling to accept that this thing had happened to my daughter, and this was the direction our family life had taken.  Then, as I learned more about the condition and the research, I realized that it wasn’t simply about adjusting my attitude – but that Rett syndrome itself might change. That some extraordinary work is going on in labs around the world, and girls like Amy might one day be unlocked. That proper, serious, clear-headed people believe it’s possible.

Knowing that, how could we tell ourselves that Amy is ‘meant’ to be this way, and that Rett syndrome is inseparable from who she really is? It became clear that it’s entirely possible to love someone the way they are, while also fiercely wanting them to be set free of the thing that holds them back…..Lots of people were kind enough to tell me they agreed, and one friend introduced me to the word ‘acceptists’ to describe those who would try to convince us that accepting our children means accepting that we shouldn’t want to ‘fix’ them. (Like anyone would ever say that to a parent whose child had cancer or similar.)

Unless we say this – unless we imagine what living without Rett syndrome would be like for the children (and adults) who have it – unless we raise the funds to support the scientists who are working on the thing that means more to us than anything else – unless we stay focused and avoid getting side-tracked by trivia – girls like Amy will stay trapped. We don’t have to accept. And we shouldn’t.”

– Catriona Moore, November 26, 2012

Paris Mounties Supporting Event

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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.

What is Rett Syndrome?

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Rett syndrome (RTT) is a neurodevelopmental condition characterized by the loss of spoken language and hand use, coupled with the development of distinctive hand stereotypes. This disorder is seen in infancy and occurs almost exclusively in females. It is usually caused by a mutation of the MECP2 gene on the X chromosome. Rett syndrome is found in all racial and ethnic groups throughout the world. It affects one in every ten thousand live female births. Early developmental milestones appear normal, but between 6-18 months of age, there is a delay or regression in development, particularly affecting speech, hand skills and gait. A hallmark of Rett syndrome is repetitive hand movements that may become almost constant while awake. Other more common medical issues encountered include epileptic seizures, muscle stiffness, osteoporosis and scoliosis. Despite its multiple handicaps, Rett syndrome is not a degenerative disease. Many individuals with Rett syndrome live long into adulthood. There is currently no cure.