Tag: EB Awareness Week

a look into the future {EB Awareness Week}

Seems like EB is getting more attention in the media these days.  Often, the attention is focused on the kids, the “butterfly children”.  I get it.  Seeing kids suffering in the way that so many do is heartbreaking and gut-wrenching.  I see them and I want to do something to help… ANYthing to help alleviate …

Pay It Forward! {EB Awareness Week}

Epidermolysis Bullosa is a really easy condition to educate others about.  It’s so… out there… no avoiding it.  People see her, they ask questions, we answer questions. The questions and comments are a part of our life, and believe me, we’ve heard pretty much everything out there. just in case you have every wondered… NO… …

EB Awareness Week!

Today is the kick-off of EB Awareness Week. If you’ve read my blog for a while, you know what EB is. If you’re fresh to the awesomeness found in this corner of the internet, you’re about to find out what it is! If you’re reading this because you have a child with EB and found …