Tag Archives: eb awareness

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…

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Without Awareness There Is No Hope

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How many times have we seen these graphics or posts stating that ‘liking a picture’ on Facebook does nothing? Not only have I seen images stating this negative attitude, but people have, indeed wrote this BS under my son’s photo as it was circulating Facebook several months ago, all the while collecting an ASTOUNDING 987,000…

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My EB Awareness Radio Interview…

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I wanted to make sure my Interview was ‘out there’ in case you missed it. I was interviewed by the “It Matters Radio to raise EB Awareness, the 3 hosts and I have a nice chat about EB about half-way in the show, click below to listen… If you love country music, then check out these…

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Courage Under Wraps

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For the past year my new friend and fabulous photographer Jodi Champagne, has been documenting my son’s life as it is. My son’s name is Nicholas Zahorcak, we call him ‘Nicky’. He was diagnosed shortly after birth with the Recessive Dystrophic form of Epidermolysis Bullosa. Jodi photographed us doing bandage changes, during trips to the various…

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EB Awareness Tags By Wayne Lemos part 5

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A super-friend from India, who is a graphic designer and an amazing helping hand for many charities, took the time to do quite a few EB Awareness Tags for this website. I’ve posted quite a few on our Facebook page, and I am now posting them on this blog a few at a time as…

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Raising Our Voice

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As a parent of a child with a Rare Disorder, a condition most Doctors have only heard about in passing in Medical School, I’ve always known how important it was to raise awareness, but it wasn’t until my friend and I started an online petition to force Insurance Companies to cover Wound Care products (you…

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EB Awareness Tags by Wayne Lemos – Part 4

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A super-friend from India, who is a graphic designer and an amazing helping hand for many charities, took the time to do quite a few EB Awareness Tags for this website. I’ve posted quite a few on our Facebook page, and I am now posting them on this blog a few at a time as…

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