RettUK.org published this interesting paper which focuses on the subject of Rett syndrome in males. Much has changed over the past 10 years as researchers and clinicians encounter more boys with this disorder. We are trying to be more mindful of including males in our discussions with others about Rett syndrome, so we are more often using terms such as “children with Rett syndrome” or “people with Rett syndrome”. Check out this paper here:
This story illustrates some major challenges Rett parents face in getting the appropriate school supports and services for their children. What is particularly shameful is that District officials say strict privacy laws that prevent them from providing board members with details about the situation! CLICK HERE TO READ MORE
This video from the International Rett Syndrome Foundation features researchers and clinicians who are on the leading edge of Rett syndrome research and treatment. They stress the importance of meeting those with Rett syndrome along with their families. This brings not only a warm human connection to their work, but provides them valuable feedback and first-hand insight into the disorder.
Here’s a quick and interesting graphical guide to Rett syndrome from a customer insight and strategy business called Beyond Analysis. It was inspired by their charity of the year the Rett Syndrome Research Trust UK.
The International Rett Syndrome Foundation has funded a two-year grant to Anna Kalashnikova, a researcher at Colorado State University for basic MECP2 research. Most postdocs don’t get grants at that stage of their careers. This article captures her enthusiasm upon receiving the news:
Today’s inspirational story comes from Ireland’s Colin Hand, whose daughter Charlotte has Rett syndrome. Colin performed the song “Smile” on The Voice of Ireland television show. We agree with the judge that he has “buckets of potential”! See for yourself at the link below: