October is Rett Syndrome Awareness Month

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October is Rett Awareness Month across the world. 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. 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 but there is significant scientific progress being made.

While Rett syndrome has only been a part of our lives for 3 years, we know only too well what an impact it has on the individuals and families who are affected. We are hoping that you can help us to continue to raise awareness and support for those individuals impacted by Rett syndrome by sharing this message with your family, friends and colleagues. By sharing this message you might help a family that is struggling to understand what is happening with their child, or help the individual who stares at the little girl in church who has Rett syndrome and for the most part unable to control her actions but is so excited to be there that she is at times loud and disruptive. Sharing this message might trigger someone to make a donation to the Ontario Rett Syndrome Association; a volunteer organization that is trying to make a difference by providing funds for regional Rett Clinics, provides support for those impacted by Rett syndrome and advocates for Rett syndrome.

In recognition of Rett Awareness Month, Ref4Rett will continue to sell purple skate lace bracelets for $5.00. Wear the bracelet and help raise awareness – we guarantee that people will ask you about the significance of it!

If you are interested in purchasing a bracelet, contact us and we can make arrangements to get it to you.

~Keep Calm and Cure Rett~

Elle 2014 photo shoot

 

Thanks to Melanie Murray at BoXphotography for the great photo!!! Always so much fun working with Melanie – she just knows how to capture the special moments. www.boxphotography.ca

10th Annual Run4Rett

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Despite what started as a very wet and rainy day, the sun came out just in time for ORSA’s 10th annual Run4Rett. It was great to see such a great turn out and connect with friends old and new.

A special thank you to Sue at The Dreaming Ladybug Boutique for the great tutus!!!

http://thedreamingladybug.wix.com/dreamingladybug

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We ‘R’ Family – Rett Syndrome Conference 2014

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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.

2nd Annual Ref4Rett Event a Huge Success!!!

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Here we are 24 hours later and we are still revelling in an amazing night, which we all thoroughly enjoyed.  Seeing friends, old and new, supporting us in this cause so very near and dear to our hearts.   From the live music, to Elle’s puck drop, to the Shoot to Win a Car and the good hockey…it was truly a great night!

We want to thank everyone who braved the weather to make it out to the event.  Thank you to our volunteers, who worked tirelessly to set up the hall and throughout the event to make it run so incredibly smoothly.   Thank you to our sponsors and all of those who donated items to the Silent Auction – there was an amazing selection of items!!!

Thank you to Cindy Hefferan, our decorator, for making the hall look spectacular; to Kara Wilson, our photographer, for capturing all of those special moments; to Joshua David Peidl, a star in the making, for the great music; to Steve McKenna for coming out to sign autographs at a last minutes notice; to Ed McMahon, our MC, who was also able to help us out last minute.

A very thank you to Todd Wood and the Paris Mounties organization for all of their on-going support and embracing Ref4Rett, our family and Rett Syndrome as a whole in efforts to continue to raise awareness and funds in hopes of one day finding a cure.

The support that we have continued to receive from this community is completely overwhelming and reminds us daily of how blessed we are.

Pictures and further details to be posted in the coming days…..

Thanks again to all!

Steve McKenna Signing Autographs Tonight

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Unfortunately, due to some scheduling issues, Mr. Walter Gretzky will not be able to join us at our event tonight. We are happy to announce however that Steven McKenna, former NHL player, has graciously agreed to come out and sign some autographs from 6:30-7:30.

Steve is originally from Cambridge, ON and played 373 NHL games with the LA Kings, Minnesota Wild, Pittsburgh Penguins and NY Rangers. After his retirement from the NHL he spent 4 season playing abroad, earning him the rare distinction of having played hockey on 4 different continents.

 

mckenna