MECP2 Family Conference Video

Here is the final cut of the Introduction from the May 2011 MECP2 Family Conference in Houston for anyone who hasn’t seen it. Thanks to Dr. Ramocki, Pam Albert, Dr. Zoghbi, The Blue Bird Circle Rett Center, Baylor College of Medicine, The JP Das Centre at the University of Alberta, and to everyone else who made this conference a great success.

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4 responses to “MECP2 Family Conference Video

  1. it would truly be a wonderful thing if the uk had the same support for my son,with mecp2, i have been told my son and my ex step son are the to oldest boy living today, my son is ninteen and stepson 33 going on 34. pete.

    • Hi Peter, The UK is starting to develop its own support group and plans for a conference (see the most recent March 15 post on this blog). It is great to hear that your boys are doing hanging in there and are among the older ones. Clement in France an Craig in Australia are both 39 now. It is good to know that many of these young adults have the potential for many years ahead of them.

    • Peter, in January this year around 12 families from across the UK all met together in Manchester for our own MECP2 conference. It was a chance for UK families to share experiences and we had a presentation from Prof. Gill Clayton Smith who is a genetisist at Manchester Childrens Hospital, Manchester. She is very interested in the condition and knowledgible around the condition. We have now set up our own UK facebook support group, and we are the process of arranging next years conference, which is to take place on the 11/5/2013 again in Manchester. We are hoping to get some more professionals to attend, and more families. We spent so much time thinking we were alone, and now know we are not, but we need to raise awareness of this conditin in the UK to replicate what the USA are doing.

  2. This made me cry….I miss everyone so very much! Yes, Dr. Zoghbi I did feel very welcome in Houston. I will never forget this experience and look forward to 2013.

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