2nd MECP2 Duplication Syndrome Family Conference

The 2nd MECP2 Duplication Syndrome Family Conference will be held in Houston, Texas, March 27-29, 2013.  To download a conference brochure, use this link: 2013 Houston MECP2 Conference Brochure   [Click on this link to download Conference Brochure]. The conference will be held at the Hilton Plaza Medical Center Hotel:

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.

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.

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.

In the News from Washington State

Families band together to unlock mysteries of rare genetic disorder

by Cathy Zimmerman in Washington’s The Daily News is about Jay Hegstad-Enneberg and the 401 Project. It includes a link to the project. Here is a brief quote:

In January, those 200 families banded together to raise $236,000, the amount necessary to fund research directed at unlocking the mysteries of MECP2 at Baylor College of Medicine in Houston.

The group calls itself “The 401 Project,” because $401 is the amount each family must raise to fund the research.

Click here for the whole story…

Dauphin County family hopes research project will help son

ABC27-TV in Harrisburg, PA, USA carried this story on the Albert family (text), MECP2 Duplication Syndrome, and Project 401 on 10 February 2012. Video can be found here. Here are a few quotes from the story by Kendra Nichols:

UK MECP2 Duplication Syndrome Support Group

There is a brand new Facebook group for families of children or adults with MECP Syndrome in the United Kingdom. The UK MECP2 Duplication Syndrome Support Group was started to link the growing number of affected families in the UK.