April 28, 2014 by ref4rett
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**
The Canadian Rett Syndrome is officially open!
The Morton Family getting ready for dinner.