These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
MECP2 duplication syndrome is a rare disorder neurodevelopmental disorder that, unlike Rett syndrome, mostly affects boys. Australian families with children with MECP2 duplication syndrome are raising awareness and much needed funding for research into treatment and a cure for this disorder. Part of these funds will go to a research project headed by Dr Helen Leonard at the Telethon Kids Institute.
Recently, the story of two Australian families and their sons was shown on the ABC program, the 7.30 Report in NSW. Click here for a link to the program.
The Van Wright Foundation was launched in March 2012 to raise awareness of and funds for research into MECP2 duplication syndrome by the parents of Van Wright who was diagnosed in November 2011.