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Over the years people have coined such phrases as “Zen of Running” and “ Zen of Cycling’, so why can’t we coin the phrase “Rett Zen”? Here’s my definition: “A mind-set and focus of energies directed at the day-to-day enduring care of those with Rett syndrome that is euphoric in nature”. Somehow is just doesn’t make sense and [...] We were intrigued by this clinical trials study being conducted by the Division of Medical Genetics at the University of Mississippi Medical Center. The University is recruiting parents of children with Rett syndrome to participate in a study to help determine potential causes of the increasing prevalence of the disorder. The study is being conducted using an anonymous on-line survey available [...] As a former brand marketing professional this announcement caught my attention for two reasons: the brand name of the molecular tool “TaqMan” reminded me of Pac-Man; and I was amazed and grateful that Rett syndrome was spotlighted as a disorder that researchers were studying using this application. This message also provided me a reassuring reminder that each and every day researchers around the globe get out of [...] We enjoyed reading this article in the July 15, 2007 issue of the St. Louis (MO) Post Dispatch newspaper highlighting nine-year old Ellie McCool’s time at the Renaud Spirit Center in O’Fallon, Missouri, a local summer day camp. Ellie is the daughter of Dave and Mickie McCool. Mickie is a regional representative for the International Rett Syndrome Foundation. Apparently [...] An announcement in the July 10, 2007 issue of the Concord Monitor (New Hampshire) newspaper caught our attention. It was a note of thanks from children of a man named Arthur Fillmore who staged a charity golf tournament that raised $22,000 to benefit the International Rett Syndrome Foundation. While most of us never knew Mr. [...] Can you imagine risking your own life to raise Rett Syndrome awareness? Over 16 years ago a team of very brave people did just that with the financial assistance of the Canadian Rett Syndrome Association. In 1991 a Canadian climbing team launched the first Mount Everest climbing expedition for charity, the [...] The recent Strollathon in Seattle raised a reported $15,000 for Rett Syndrome Research. We thought you would enjoy seeing a glimpse of that event through first time participants. Lauren and Adam Cramer raised $1,800! Kudos to all event organizers and participants. If you have news from your Rett Event that you’d like to share, please drop us [...] We read about this wonderful and inspiring story from a discussion group the other day and wanted to share it with others in the Rett Community. The story made the pages of the Boston Globe and will be featured in an episode of a television series called NASCAR Angels this fall. Source: Boston Globe, 08 July 8, 2007 Summary Chris [...] For the first time, the U.S. Department of Education has issued determination letters on implementation of the Individuals with Disabilities Education Act (IDEA) to each state education agency for Part B and to each lead agency for Part C. The determinations, required under the statute, are part of the on-going efforts to improve results [...] Source The Nashville Tennessean, Nashville, TN, 04 July 2007, Tennessean.com Publisher’s Note Kudos to the Poulton family on a great fundraising effort. Having lived in Nashville, Tennessee in the 1990s, I can attest to the generosity and determination of residents in that part of the United States. This is outstanding evidence that even a family organized event can make [...] |
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