Category Archives: Administrative

2013 MECP2 Duplication Syndrome Family Conference Survey

If you are hoping to attend the 2013 MECP2 Duplication Syndrome Family Conference in Houston, please fill out this short 4-question survey to assist the conference committee in planning. CLICK HERE FOR SURVEY

We need to get an approximate idea of attendance to ensure a good fit of facilities, so just let us know what you are currently thinking you might be doing, even if you haven’t made any final decision.

 

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Families Seek Funding for Research

26 March 2011 Families of children and adults with MECP2 duplication syndrome have been working hard to raise cash to fund research that may lead to effective treatment.  One part of their effort is collecting votes in a contest that will award $5,000 toward this research. With just 4 days to the polling deadline, they have a narrow lead, but competition is stiff. If you want to support their effort, follow this link and vote for Alli Holland’s dream.

Growing World Interest in MECP2 Duplication Syndrome

As more boys and girls are being diagnosed, thee has been a growing world interest in MECP2 Duplication Syndrome. The 401 Project and other fundraising efforts have also helped to raise awareness. Following site statistics for this MECP2 Duplication Syndrome Blog really indicates a great deal of world wide interest. Here is a graph that indicates where Google searches were initiated that led people to this site.

(see text below for more details)…

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Family Talk Update

Just a quick note to indicate that the information on the MECP2 Duplication Syndrome Family Talk FaceBook Group has been updated. Family members of individuals with MECP2 Duplication Syndrome are encouraged to consider joining the group.

MECP2X2: 2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 8,500 times in 2011. If it were a concert at Sydney Opera House, it would take about 3 sold-out performances for that many people to see it.

Click here to see the complete report.

Changes on this Site

This site is currently undergoing changes in look and content. Feel free to let me know what you like or don’t like. Also, suggestions about improvements or future content are welcome. You can use the comment/reply box for this post or the CONTACT page (pulldown menu under ABOUT tab above) to share your thoughts. I promise to come up with a better looking header for this page…  This one is admittedly pretty ugly and looks like something left over from the psychedelic 60s.

A Personal Matter

6 February 2010- Edmonton, AB, Canada A quick apology to MECP2 Duplication  blog readers. Sorry for neglecting this blog lately. I’ve been distracted by another issue regarding potential cuts to Alberta’s Inclusive Post-Secondary Education programs for adults with intellectual and developmental disabilities. So, I’ve devoted the last week to establishing  a new blog on thre topic of Inclusive Post-Secondary Education. For those icad readers who are interested, it can be found at inclusivepse.wordpress.com

Our son who is 19 and has MECP2 Duplication Syndrome attends one of these programs Continue reading

MECP2 Duplication Syndrome Website

Many readers o this blog will have already visited the MECP2 Duplication Syndrome Website. If you haven’t, I recommend it strongly, especially if you are a family member of or close to a family touched by MeCP2 duplication syndrome. This is a wonderful site that helps links families together. It has been a source of strength for our family at times and I know it has been for other families, too. Please take a look at this wonderful site. Continue reading

Welcome to the MeCP2 Duplication Syndrome Blog

Welcome to to the MeCP2 Duplication Syndrome Blog.  This blog is inteneded to share information of ineterst to  families affected by MeCP2 Duplication syndrome. The information shared on this site should not be considered medical advice.It is important to remember that each individual who has MeCP2 duplication is unique. What works well for one, may not work for others. Therefore, it s essential to consult with your family members physician  before applying medical interventions discussed on this blog.