In October we called our awareness campaign the HOPE campaign, because we wanted to talk about the things that we are hopeful about. We wanted to talk about how all those little things are slowly coming together, helping us progress, and how every day we are beating Rett syndrome a little bit at a time.
If last year was the year of hope, then my hope for 2016 is that it’s the year of progress. No matter how small the steps we make, my New Year’s wish is that we keep looking forward.
I don’t just mean in a research sense, I mean in every sense. Keep your minds open to possibility that extends opportunities to children with Rett syndrome.
The first most obvious possibility has been the eye gaze tech; it’s truly cracked open the world of Rett syndrome for the people that have been affected by it.
So how do I see progression in the eye gaze field?
Getting the eye gaze is only the first step in this journey; it’s a much bigger task to learn how to use it and to teach your child to use it.
It’s pretty much a full time job. But there is opportunity in this space, with organisations like rettuniversity.org trying to crack open the possibility for parents to learn “Rett syndrome specific” techniques to help their children.
As a community we can build the hive of knowledge we need to extend these opportunities to all families with Rett syndrome, not just the ones lucky enough to attend one of the brilliant courses from Susan Norwell.
I hope we continue to make strides in pioneering Neurohabilitation and Physiotherapy fields, using techniques like Feldenkrais and Cuevas Medek Exercises (CME), as well as being supported by amazing new tech devices which are helping to reset neurology.
My hope is that we start to find new ways to access money to help us with research from beyond the family network, like the Rett Syndrome Funding in the Department of Defense’s 2016 Appropriations Bills achieved by rettsyndrome.org
I hope that we continue to look forward as a community, but also that we remember the people that have helped us achieve remarkable changes and progress in Rett syndrome.
I was speaking to some of the mothers of the older girls; most of them were told their daughters would not live to see adulthood, but that has changed too. These are the pioneer families that funded the building blocks of progress that we live with now. Our understanding of Rett syndrome has changed significantly because of these people and not just the doctors and scientists who have studied Rett.
Every year we are trialling more drugs, with more positive results; we are constantly learning more about Rett syndrome, and slowly we are turning that knowledge into a power to fight Rett.
I asked in November for images of girls (and boys) with Rett looking into the camera. Such a simple thing for most people, but almost impossible for people who suffer from the disorder. I asked for those pictures because I know that sometimes, looking forwards is the hardest thing you can do, and who better to show you how hard?
Progress happens by learning from the past, whilst looking to the future.
Keep looking forward.