As we finalize the agenda for this year’s Connect Conference, I am once again amazed…Blog New Duchenne Therapies in Development 4 Favorites
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…Blog Advocating for Open Access 2 Favorites
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…Blog Flying Solo a new novel by Jeanette Vaughan 1 Favorite
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…Blog Tips for parents for dealing with stress 1 Favorite Wyatt turns 4
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…Blog Wyatt turns 4 1 Favorite
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…Blog My Greatest Wish 3 Favorites
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…Blog Pride and Heartache 2 Favorites Co-Blog: To Have and Have Not with Duchenne
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…Blog Co-Blog: To Have and Have Not with Duchenne 3 Favorites World Muscle Society 2011 Report
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…Blog World Muscle Society 2011 Report 1 Favorite trick or treating with Santa
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…Blog trick or treating with Santa 1 Favorite
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…Blog Seasons 2 Favorites Duchenne as an Endurance Race
Posted by Tracey Passantino, Founder and CEO of Race4Girls.com live link to this blog:Blog Duchenne as an Endurance Race 1 Favorite Genetic Therapy Science News Blog Genetic Therapy Science News 3 Favorites So Much Happening this Weekend....
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…Blog a little angel 2 Favorites