As we finalize the agenda for this year’s Connect Conference, I am once again amazed…

In 2008, PPMD joined the Genetic Alliance and others in the rare disease community, in support of “open access” – essentially ensuring that all NIH funded researchers make available to the public…

First, my disclaimer. I’ve known Scott and the Sands family for…

Hello everyone!   I wish I could say that I had written a wonderful book like Mary Lou Weisman's Intensive Care.   However I did right a good one!    Flying Solo is the first in a series of books…

Hi everyone.

As a wellness coach one of the biggest issues my clients deal with is stress. DMD parents obviously have a large amount of stress in there lives so i'd like to discuss some…

This morning at 1:40am my sweet baby Wyatt turned 4.  I can't believe I'm even looking at that number 4.  4 is a big kid, what happened to my "baby!"  I'm  honored and blessed to call myself…

     I posted this on Facebook but felt I should share this here also.  I have 3 wonderful boys.  Tom is 16, Kevin is 13 and Brian is 10.  Tom and Kevin have DMD, Brian does not.

     I…

My son Patrick and I had plans to go to Columbia, South Carolina this week. It was to be a father-son weekend just hanging out. While participating in the Exon…

Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started…

At the recent World Muscle Society meeting, which took place in Portugal, a great deal of new data on exon skipping was presented, both on the status of current human clinical trials and on the…

It was three o'clock and I decided to stand outside to wait in my new hot pink beehive wig. Just as I finished adjusting the three plastic black spiders, that cascaded down the sides, I saw the…

Fall is my favorite season. It is a wonderful time of year from the time summer ends with warm sunny afternoons, cool crisp evenings and long shadows to the mid season with brilliant foliage, the…

Posted by Tracey Passantino, Founder and CEO of Race4Girls.com live link to this blog:

How Shea Holbrook…

In 1986, Louis Kunkel is recognized for discovering the dystrophin…

Greetings Friends!

 

We have a very busy weekend ahead of us, with some fantastic events…

Laughter echoed from down the hallway. I paused folding the laundry momentarily to listen. It was MEA week and my two younger sons were off from school for the next few days. We had happily agreed…