I hadn't ever heard of this condition until my friend, Mike sent me this email to help get the word out. As a parent and grandparent, I can't imagine how I'd cope if I had a kid or grandkid with EB.
Lorraine is a good friend of mine from my Lockheed days. She is the mother of Garrett who is featured in the video along with his Dr.
Please take a few minutes to watch this video. If you are so inclined, please feel free to make a donation. There is a link at the end of the clip for where to do so. Even if you can't make a contribution, please pass this along for others to see.
The more exposure for EB the better. One problem with EB is that the disease is so rare, it is hard to get funding for it. Things like cancer and Aids affect far more people, so the funding goes there. It makes sense when you look at the problem from a cost benefit analysis. However, when you have a child with a rare disease, you want a cure for that disease too.
Anyway, please watch the video and pass it along. I would appreciate it personally.
For more information or to donate, click here: http://dermatology.stanford.edu/research/research.html