This is a short personal note. For anyone who might have missed these blog entries over the past months, I apologize. Starting this past spring, I have been having some health issues of my own. Dealing with these issues has taken up a lot of my time, and my energy level has been limited.
I am happy to say that I am doing somewhat better, and want to start posting again. Thanks for your patience. Time to wake up.
After my last post, I heard from quite a few people asking how they could find MECP2 Duplication Syndrome research articles and some wanted to more specifically know how to find articles from specific countries. PubMed is a great tool for finding this kind of information and it is available for free to everyone thanks to the the United States National Library of Medicine, National Institutes of Health. For those interested in finding research articles who are not already using PubMed or other similar tools, here is some basic information to help get you started.
A good place to start is this PubMed web Page. This provides a search window and and lots of helpful hints and tutorials that can help you use this database to find the information you are looking for.
If you want to become an expert or if you get stuck, you can watch some of the tutorials, but most people can find what they are looking for if they dive right in and do some searching. So here is an example.
At the top of the page the search window looks like this.
This post is intended only for Members for the MECP2 Duplication Syndrome Facebook Family Talk Group. Group membership is limited to family members of individuals with MECP2 Duplication Syndrome
Our MECP2 Duplication Syndrome Facebook Family Talk Group Photo Directory currently includes photos and some information about 167 individuals. It has been about a year since we invited photos, so I am renewing the call for photos at this time.
To include your child (who has this syndrome) in this album, please e-mail a photo to email@example.com
Please include the child’s name, date of birth, and the country where you live. If you would like, you are also welcome to include the names of family members, city and state, date of diagnosis, and other relevant information.
If the pictured is deceased, you may choose to indicate when they passed away.
You can use the same e-mail address address to send a newer photo or update previous information, but only one photo of each individual will be included in the directory so newer entries will replace older ones. NOTE: if you are updating a photo, you will probably need to include all the associated information as the previous information normally is lost when the old photo is replaced.
To view the directory album, you must be signed into facebook and be a member of the MECP2 Duplication Syndrome Family Talk Group. The directory album can be found at here.
2015 has been a year of progress. There has been spectacular progress in research, families have worked hard to support these efforts, more families have been connected through the Facebook family talk site and other similar sites, and more children and adults have been diagnosed at earlier ages… including some prenatally.
Sadly, 2015 has also been a heartbreaking year. More children and adults passed away, and many others underwent major health crises.
This year more than 8700 individuals accessed more than 14,000 pages on this website. These individuals came from 92 different countries. More professionals and members of the public are learning about MECP2 Duplication. For a complete annual report from this website, click on the link below.
The 401 Project coordinates efforts to raise money for research on MECP2 Duplication Syndrome. They are currently seeking input on the best way to communicate with affected families. Please consider filling out this short one-question survey. Most respondents complete this survey in less than 45 seconds. Thanks.
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