Tag Archives: Web resources

Chromosome Disorder Awareness Week ( 7 – 13 th June 2015 )

Unique

As strange as it may seem rare chromosomal disorders are quite common.

Sunday, June 7th, starts Chromosome Disorder Awareness Week. Unique is an international organization that raises awareness of chromosome disorders  and their Awareness week kicks off 7 June 2015. For more information, check out their press release.

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Where do visitors to the MECP2 Duplication Syndrome Blog site come from?

Each month, about 1000 pages on the MECP2 Duplication Syndrome Blog site are viewed by people from around the world. Since 25 February 2012, WordPress has collected data on countries of origin of visits to this website. In total, visitors from 128 countries viewed at least one page on this site. The following list is the number of pages viewed by country of origin of the viewer for the 26 countries with at least 100 pages viewed: Continue reading

MECP2 Consortium Update – Breaking Down the Walls/ RSRT Blog

flaskToday’s post in the Rett Syndrome Research Trust Blog provides an important update on the work of the MECP2 Consortium and its quest to determine the functions of the MECP2 protein. The Rett Syndrome Research Trust Blog is a great general resource for keeping up with the science working toward all the MECP2-related disorders.

Dr. Zoghbi’s June 2009 NIH Lecture

Dr. Huda Zoghbi agve a great lecture on “Neurobiology of Rett syndrome and related disorders” in June 2009 for the National Institute of Health. parts of the one-hour lecture are technical but much of it in plain language. The lecture does a great job of describing how MECP2 Duplication Syndrome was discovered and some of the similarities and differences between MECP2 Duplication Syndrome. Its well worth watching. Continue reading

New Improved Website

7 December 2009 – Just in case you haven’t seen it yet, I want to let everyone know about the new and improved MECP2 Duplication Syndrome Website and to congratulate everyone involved  on a job well done. First, Pam Albert, deserves everyone’s thanks for her dedication to the cause of better lives for children with MECP2 Duplication Syndrome and their families that goes far beyond just the website. The original website was a great asset to our family because it started to link us with other families and I know many other families feel the same way. Like all parents of children with severe disabilities, Pam has had more than enough on her plate to keep her busy, and she deserves a great deal of credit for the vision, energy, and organization to go beyond her own family to reach to all of us. Continue reading