Charity of the Month
When I started this blog, I had intentions of highlighting a new charity each month. Not only was it difficult to choose a new one each month and get it up on time, but ever since little Easton Friedel was born last August, I haven’t been able to think about much in the realm of charity other than helping to find a cure for Epidermolysis Bullosa.
Epidermolysis Bullosa, or EB, is a devastating genetic disorder of the skin that affects 1 in 50,000 babies born in the US. While EB is dubbed a “genetic disorder”, it is not necessarily hereditary. There can be no family history of EB, but a child can be born with it due to a spontaneous genetic mutation. For a child with EB, their skin is as fragile as butterfly wings, which is how they got the nickname “butterfly children”. Any sort of friction, even a parents’ soft touch, can cause the skin to blister, tear, or even fall off. Many babies born with this awful disease are born missing the skin from one or more limbs. Right now there is NO CURE…only wound treatment.
DebRA of America is the only national non-profit dedicated to funding research and providing services and programs for those with EB. While there are many smaller non-profits that are dedicated to EB, many of them give the money they raise to DebRA. If you can, please support this charity and help us find a cure!