Just a week ago, I posted an entry on the Agony and Ecstasy of parenting a child with severe and multiple disabilities. The next day, a friend was telling me about a remarkable interview he heard on CBC radio with Andre Solomon, author of Far From the Tree: Parents, Children and the Search for Identity, that dealt with some of the same things. I was interested enough to check out one of many interviews with Solomon on the the internet, and I was 50 impressed with the interview that I bought the 996-page book.
Since this book has been a best seller for about a year now, I am a little embarrassed that I am just hearing about it. I haven’t finished it yet, but I have read enough to say that it is truly wonderful and important reading for anyone who wants to understand parents of children with intensive needs or any parent whose child is exceptional in some significant way Continue reading
Amelia Rivera is home after receiving a kidney transplant. According to USA Today the surgery was done at Children’s Hospital of Philadelphia, where her family previously complained she had previously been denied being considered for a transplant because of her intellectual disability due to Wolf-Hirschorn syndrome. The surgery took place July 3, 2013. Continue reading
This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways. Continue reading
Families of children or adults with MECP2 Duplication Syndrome are invited to join one (or more) of the Facebook groups connecting families. The MECP2 Duplication Syndrome Family Talk Group links more than 300 family members from around the world. Topics of discussion include: information sharing, mutual support, news on research and treatment, practical tips, and lots more.
To join these groups, family members must join Facebook (if they are not already members). Then go to the group page and request membership.
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: Continue reading
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.
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.
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.
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…
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: Continue reading