The Daily News in Longview, Washington, published an article on Jay Hegstad and his family today. The story, “Rare condition poses daily challenge for Longview boy, mom” does a good job of describing some of the challenges facing families of children with MECP2 duplication syndrome, and especially the additional challenges of single parenting. This article includes a couple of nice pictures of Jay and his mom (NOTE: You have to click on the image tab, near the top of the story to see the second picture). News stories like this one are helping to educate the public about MECP2 duplication To view the article, click here.
About this BlogThis blog is intended for families, researchers, and professionals interested in better lives for children and adults with MECP2 Duplication Syndrome. Pam Albert's MECP2 Duplication Syndrome Website provides a great deal of useful information for families and profiles of many of the current children and adults diagnosed with this condition. Facebook users who are members of families if individuals with MECP2 Duplication syndrome may wish to join the Facebook MECP2 Duplication Syndrome Family Talk Group for discussions of family matters.
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2010 Winner Medical billing’s Top Genetics BlogAn expert panel reviewed 400 genetics blogs and selected the top 40. Happy to say this was selected as one of those 40.