Debra is a life saver. Point blank period. This was the very first information that we received from the dermatologist as soon as he made a diagnosis on Gunner. It is the website that all of our family went to while we were still in the hospital and knew everything about Gunner before we did. At first, it was so hard to look at, but now, I love to look at all the new pages, fundraisers, etc. Debra has helped us in so many ways.
Debra stands for The Dystrophic Epidermolysis Bullosa Research Association of America. Their saying is, "until there is a cure... there is Debra." That rings true for us in so many ways.
Gunner's bandages and wound care supplies are so ridiculously expensive. We got sent home with quite a few things from the NICU when we left, but we soon found out that they wouldn't last forever. We were having to get supplies from local pharmacies. Sometimes none of the pharmacies around carried what we really needed, so we would have to improvise. But then we found out about the Debra Wound Care Clearinghouse. All we had to do was send them a simple email, tell them the things we needed, and we had a HUGE box soon in the mail with literally everything. That would tide us over until Gunner's supplies got approved by insurance. They have a new family advocate program, an EB nurse educator for any questions we may have, and they also have a newsletter for current information. Debra is always taking donations and funds for research for EB. Many of the fellow EB families I know are always doing fundraisers and almost ALWAYS part or ALL funds will go to EB research.
Debra also puts together a patient care conference annually for EB families to get together and listen to EB specialists and speakers and just learn more about EB and current topics.
This organization is there all the time for so many EB families and truly cares about what this disease is and finding a cure. Please visit www.debra.org for more information or to donate. :) I know I speak for most when I say THANK YOU!