7th Annual Ref4Rett

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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Thank You Sacred Heart Lions!!

We feel so blessed to be a part of such an amazing community. We were once again reminded of this during the month of October, as the students and staff of Sacred Heart School recognized Rett Syndrome Awareness Month.
 
We want to thank the Student Council for coming up with the idea of supporting Ref4Rett in the month of October. Thank you to Elle’s teacher, Miss. MacKinnon, for her leadership with the Student Council. Thank you to our principal, Ms. Mitchell, for her on-going support of Ref4Rett. A big thank you to all of the staff, the entire student body and their families, for their participation in the popcorn sales, other donations and in helping us to continue to raise awareness.
 
Our school has once again demonstrated the true definition of “Love Tenderly”.
 
Click on the link below to read the article published this week in the Brant News.
 

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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2015 Research Grant Awarded

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/

3rd Annual Ref4Rett Event

Neither of us are writers at heart, so each year when it comes time to reflect on the past year and create a post to share with all of you about the upcoming Ref4Rett season, we find ourselves stuck on what to say and how to say it. We are not looking for pity or sympathy but feel that it is important to continue to share our journey, our accomplishments and spread awareness.

Today marks the second anniversary of Elle’s diagnosis and the day that Rett syndrome became an everyday part of our vocabulary.  Our first year was about grief and loss, the second year about fear and a lot of “don’ts” and this past year has been about having Rett syndrome hit us square in the face – what it really means, the impact it can have and how each day is truly unpredictable.

This year was a year full of ups and downs.  In April, we celebrated the incredible launch of the Canadian Rett Syndrome Registry, which we are really proud to have been able to fund a large portion of the development of this Registry through all of our fundraising efforts.  We are also so thrilled that the Ontario Rett Syndrome Association (O.R.S.A.) has created the Hope Fund.   This fund exists solely for research.  One hundred percent (100%) of all of these dollars will go to Rett syndrome research to find a cure and/or treatment for Rett syndrome.  The first fifty thousand dollar grant that will be issued this year is solely possible because of the efforts of Ref4Rett and the tremendous support that we have received from everyone.

Despite all of those great celebrations, this year we also learned how truly hard it is to be a parent of a child with a syndrome that many (not even highly qualified doctors) are not really knowledgeable about or truly understand.  Throughout this past summer, we saw a glimpse of what life would be like if Elle suddenly lost the ability to walk and talk, and the terror that was in her eyes when she was going through the loss.  We learned how truly vulnerable we are and the true meaning of being helpless; when you see your daughter disappearing before your eyes and not knowing what do about it.  We also saw the extraordinary commitment of the doctors who we’ve had the honour of meeting in the Rett community who responded so quickly to our cries for help; trusting that we really do know Elle better than anyone else and who truly listened to our worries.

It has been a year, where Elle has transitioned in her appearance from being a little girl to a big girl of 7.  Being a “big girl” has brought along with it higher expectations of what is “proper” or “normal” behaviour in public.  We have started to notice more looks from those around us who do not realize that she has Rett syndrome.  She is no longer just a “cute little girl” who is just being “cute”, but a 7 year old who makes noise at times where it maybe inappropriate; drawing looks of disapproval from those who do not understand.  We as parents in turn feel the pressure of “why can’t you keep your kid quiet”; when all we really want to do is shout out “SHE HAS RETT SYNDROME AND WE ARE JUST VERY GRATEFUL THAT SHE CAN TALK”.

Despite the busyness of life, we continue to be determined to both raise awareness and funds to support on-going research.  It is for that reason that we reach out to you today.  In the last two years, Ref4Rett has raised over $100,000 in support of O.R.S.A., all of which has been dedicated to research.  Moving forward, all of the Ref4Rett funds will continue to be dedicated to research and distributed via the Hope Fund.

As in the past two years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C).  On January 31, 2015, we will be hosting the 3rd Annual Ref4Rett Event at the Brant Sports Complex in Paris.  This year’s event is set to be bigger and better and will feature two hockey games.

The first game that starts at 5:30 p.m. and will feature an alumni game between the Paris Mounties Alumni and the Toronto Maple Leafs Alumni.   For one lucky fan there will be the opportunity to coach the Leaf Alumni team through an online auction.  The highest bidder will win the opportunity to sit behind the leafs bench for the entire game and be in the dressing room with the team between periods.  Visit www.ref4rett.myevent.com and click the “Be the Leafs Coach” tab to place your bid.

The second game starts at 7:30 p.m. and will be the last regular season game between the Paris Mounties and the Ayr Centennials.

Tickets to the event are $20 each and include admission to both games.  Tickets are available at the following locations: Legends Tap House & Grill, 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 be an autograph session with the Leafs Alumni and a silent auction.  Our goal this year is to raise $50,000.00 for 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.

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 and prayers, they are all so truly appreciated.

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We ‘R’ Family – Rett Syndrome Conference 2014

What an amazing weekend!  We spent the entire weekend at the We ‘R’ Family Conference in Hamilton hosted by the Ontario Rett Synrome Association (O.R.S.A.).  As parents of a daughter with Rett Sydrome, we must say that attending our first conference was very exciting and informative.  It is difficult to decide what information had most impact for us, as there was just so much!

We were able to meet other families from all over the country who are also raising daughters with Rett Syndrome.  It was a nice feeling to talk to others and realize that we are not alone in this journey.  We realized that not only do we have the support of so many others, but we can also provide support to other families – WE truly R a FAMILY!

Throughout the weekend, we listened to some great presentations from some unbelievable individuals from the medical field, scientists and an assistive technology specialist.  It was easy to see that these individuals are clearly very committed to and passionate about Rett Syndrome.  This was evident not only in their presentations but also in their availability to families over the weekend.  At one point in time, we had an ad hoc discussion with the 3 doctors from each of the Rett clinics in Ontario regarding a question that we had about Elle –where else does that happen??

We learned that there is currently a ton of research, animal testing and even a couple of clinical trials (in the USA) underway. It was great to get a better understanding of what this means for us and why they are concurrently testing various methods to improve the lives of those impacted by Rett Syndrome including the possibility of reversal of symptoms. 

We were also provided some great information about how to deal with the day-to-day lives of these individuals; from approaches to treatments, the development of a complex care plan and even strategies to engage children and adults in conversations and achieving literacy results!  Many of which we plan on implementing.

Elle was able to join us Saturday night for the dinner celebration.  Elle enjoyed seeing her Rett sisters as well as all of the doctors who she loves all so much.  The highlight of Elle’s night was meeting CHCH Morning Live Co-Host, Annette Hamm, who was the MC for the night.  Unlike many other children Elle’s age, Elle LOVES the news (if we are home, the news must be on) and was incredibly ‘star-struck’, asking several times “Annette come to Elle’s house?”

One of the highlights of the weekend for us was the launch of the Canadian Rett Syndrome Registry.  This is where all of the money that we have raised through Ref4Rett over the last two seasons has been allocated.  The registry is a CRITICAL step that will organize the Canadian Rett Syndrome population to attract more research opportunities to Canada with a special focus on clinical trails of potential new treatments.  It was an overwhelming feeling to know that with all the support that we have received from so many people that Ref4Rett has been a key financial contributor to the launch of the Registry – Thanks again to each and every person who has supported us!  Our hope from the start has been that the Registry will make a drastic difference both in Elle’s life, and in the lives of everyone in Canada impacted by Rett Syndrome.

**If you know anyone in Canada living with Rett Syndrome, we strongly encourage you to register at http://www.rett.ca/registry/.   Please share this will everyone you know, as this is the next step in making a difference!**

We left the conference having made some new friends, connecting with old friends and having made some great contacts in the medical/research field.  The weekend helped to reinforce our great sense of hope that we can, and are, making a difference in Elle’s life both now and for the future, and have already started the planning process for the next Ref4Rett season.

Keep Calm and Cure Rett!

 

**We were completely unprepared with a dead battery in our camera, so we’ve taken a few pictures from the O.R.S.A. site to share**

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The Canadian Rett Syndrome is officially open!

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Beautiful Angels!

 

 

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The Morton Family getting ready for dinner.