I am preparing for and getting excited about the 7th World Rett syndrome family conference next week, June 22-24, 2012, in New Orleans, Louisiana! For those of you who are not familiar, Rett syndrome is a developmental disorder that is diagnosed in 1 in 10,000 girls. A child with Rett syndrome will have a period of typical development, followed by a period of slower development or regression. Some signs of Rett syndrome are loss of communication skills and functional use of hands. Signs of Rett syndrome may be easily confused with autism. If you would like to learn more about Rett syndrome, you can learn more at the International Rett Syndrome Foundation:
This year’s conference is especially exciting because it is the first time the United States has hosted this conference. The World Rett syndrome family conference will not only focus on medical issues, but also educational issues such as communication and learning. The following link will take you to the website if you want to learn more about the conference:
UPDATE…The 7th World Rett syndrome congress provided a variety of information for parents and professionals alike! I was surprised to learn that characteristics of Rett syndrome vary widely from girl to girl. Another thing I learned was that Rett syndrome is not exclusively diagnosed in girls anymore, depending on the gene that is affected. It was a busy weekend with lots to learn from focuses from sleep patterns to reading to communication and sibling experiences.