SO much is going on in the world of Rett syndrome, that I have fallen woefully behind in keeping up. To my defense a lot has been going on in my little world that needed attention, BUT as a State Rep, I’m more behind than I should be! So, a quick recap of some great things happening.
First, there is now a page for BOYS!!! on the Rettsyndrome.org website, check out the page-here!
Next there are still ongoing trials and studies!
The Natural History Study is still ongoing. A very important piece of work, as it is a long term data collection on the children/adults in the study, following them for years, providing invaluable information on the progression and long term affects of symptoms and on families as a whole, giving a better understanding of the big picture. Here is some info on the Natural History Study. should-i-participate-in-the-natural-history-study ; natural-history-study-information-sheet-rettsyndromeorg-2016
The Sarazotan trial is a promising undertaking for girls/boys who suffer respiratory issues. It is still recruiting AND is available in a few places internationally. See the information flyer-here.stars-sarizotan-recruitment-flyer-112016
From Paige Nues:
the Family Rettaway 2017 will be the weekend of Sept 15th in San Antonio, TX with a special Rett Syndrome Awareness Day at Morgan’s Wonderland, a park designed specifically for people of all abilities and **new** this year they have built a fully accessible water park! We hope all can join us, see that life goes on after the diagnosis and family vacations are possible. We can get together for fun casual dinners and wonderings at the San Antonio Riverwalk. No fundraising, no lectures, no conference fees. Just fun time to be together and show our girls and women and boys and siblings a good time, just for them! A hotel with group rate will be shared soon.
And the very exciting news about the 2018 Conference being at the end of June in San Diego! So, even though I could travel every day, I think I’ll just stay down there anyway and enjoy the weekend surrounded by my great, big family.
Lastly, but my no means least of all, in case anyone missed it, Jennifer Endres has resigned her position as Family Support Representative. I want to send her special thanks from me and Katie for being such a positive influence in our lives. She has faced the challenges of a special needs child head on, but not just one child, ALL of our children; and that takes a special kind of soul. Thank you to her husband, Justin, who is a great guy and must be one of the most supportive husbands on the planet, that the Rett community was graced by her in such a major, consistent, ever present way. I’m sure I speak for all of us when I wish her the very best of luck and happiness as she embarks on this new, (hopefully) easier journey in Rettland. Thank you and much love!