Tag Archives: Family & Parents

1st International MECP2 Duplication Syndrome Family Conference

Texas Children's Hospital26-27 May 2011 The first 1st International MECP2 Duplication Syndrome Family Conference in Houston, Texas was attended by approximately 200 people representing 45 families. There were three major components to the conference: [1] scientific and clinical presentations, [2] data collection for ongoing research, and [3] social events for families. Continue reading

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Widening the field of vision of your hope

Doctor will I be able to play the violin after my surgery?

Of course, you’ll have no problem playing the violin.

That’s strange, I could never play it before.

A short meditation on hope

Everyone knows that old joke, but what makes it funny and why has it been told and retold over so many decades?

At least part of the reason that it is funny is that it deals with human hopes Continue reading

Mystery of Joshua: Sturbridge Villager

Joshua

18 February 2010 – Wales, MA, USA “The mystery of Joshua,”  written by Christopher Tanguay was published on the front page of the Sturbridge Villager. It is the story of Joshua Bishop and his family and their journey through diagnosis and life with MECP2 Duplication syndrome. The story is well told and weaves together useful facts and family perspectives. Here are 2 short excerpts:

The syndrome, which was onlyidentified in 2005, is caused by a duplication of DNA on Continue reading

Psychology Today-Disabled and Thriving

Melissa Blake’s “Disabled and Thriving” Psychology Today blog for January 27, 2010, is based on her interview with Sarah Korsiak Cellier, the mom of a son with MECP2 Duplication syndrome. the title of the entry, “Words of Wisdom Wednesday: A Mother and Son’s Journey” tells a lot about it. Continue reading