EB Awareness Week 2013

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Somebody once said that even though EB is rare, each child suffers enough for an entire village. It’s true. There are other conditions, even more rare than EB that get more funding, more attention, more care, while many EB families, dealing with children that suffer immensely, fall through the cracks.


Can you help?

What you can do is very easy.
See this picture on the right? Click on it and it will take you to the official Facebook post. All I am asking to do is to ‘like’ and ‘share’ it with your friends, in the hope that one of your friends, or you friends’ friends might be willing to either donate for a cure or perhaps might know someone that can help make a difference for these children.

The two organizations that I am asking to donate to are:


Debra (Dystrophic Epidermolysis Bullosa Research Association) supports the families, provides information, and donates funds to people in the research field.

The EBMRF (Epidermolysis Bullosa Medical Research Foundation) is strictly raising funds to donate to research for a cure.

If you live outside the United States and would like to help, I humbly suggest Debra International at http://www.debra-international.org/homepage.html. They have chapters all over the world. You may choose your country and a link to your local Debra chapters and info will be displayed. If there isn’t one in your country, choose a nearby country or contact Debra International directly.

Thank you for your support and, together, let’s make EB disappear!
We also want to thank our sponsors from http://www.jumpersjungle.com/south-gate/ (kids birthday parties near South Gate) for supporting us!!

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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