Happy Fathers Day 2012!

Happy Fathers Day to all fathers and especially to fathers of boys and girls with special needs! In many ways, I have been privileged to be a father and privileged to be a father of a child with intensive needs. Yes, it has been hard at times, but it has enriched my life a lot. One way that it has enriched it is by putting me in touch with a lot of great families of kids with special needs, and that includes a lot of extraordinary mothers and outstanding fathers.

So to all the dads out there who have stood by their families and done the best they can for them, I just want to say that thank you, you have my respect and you are an inspiration for me and others to try to live up to.

US Announces New Administration for Community Living

The United States has announced a significant reorganization of disability and aging administration under Health and Human Services. The new Administration for Community Living with a mission of “enhancing and improving the broad range of supports that individuals with disabilities and seniors may need to live with respect and dignity as full members of their communities.” This new agency combines three former organizational units: the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities.

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.

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:

Dr Melissa Ramocki Receives Funding for Pilot Project

26 January 2012 Baylor College of Medicine announced awards of the first Alkek Center for Metagenomics and Microbiome Research pilot project grants. The Press release list six funded projects. At the top of their list is:

Dr. Melissa Ramocki, assistant professor in pediatrics – neurology – Organismal Shift in the MECP2 Duplication Syndrome.

Pam Albert’s Plea to Tim Tebow

Here is Pam Albert’s Plea to Tim Tebow. She is trying to get this video to be viewed by as many people as possible to help get Tim Tebow on board to support her efforts to raise awareness of MECP2 Duplication Syndrome and raise funds for research.

Pam Albert’s MECP2 Duplication Syndrome Website

Most people who read this blog will already been very familiar with Pam Albert’s MECP2 Duplication Syndrome website. For those who are not familiar with it, it is a great resource for families and anyone else interested in the syndrome. It has a lot of great information, including individual information on many of the individuals affected and their families.

This video highlights the contribution of Penn State students’ work to the development of the Website.