EB in the News

A lot has changed since we first launched the EB Resource blog a little more than 3 years ago. Finding links to anything related to epidermolysis bullosa was difficult — not that it’s gotten easy to do, but in 3 years’ time, there are definitely far more people talking about EB than there were before.


Each time we go online and find a new YouTube video or an article about a family hosting an EB-related fundraiser or a link to a local TV news outlet's story about a family faced with EB, we are encouraged. Our whole goal has been to start a dialogue across the country about EB, and our daily mission is to present these little snippits of conversations to our community to help further the talk within our own circles, our own schools and neighborhoods. And we’re definitely getting there.


In the past year, we’ve watched people across the country come together in support of young parents facing the loss of their children to EB — parents like inspiring mom Courtney Roth whose son Tripp prompted many to hold EB awareness rallies and fundraisers. We have witnessed prayer vigils and virtual campaigns to support families going through the touch-and-go nature of clinical trials like the Knuth family, as son Charlie underwent stem cell replacement at a Minnesota children’s hospital and faced both victories and setbacks throughout the process.


We are reminded each time we produce our own blogs that each new story we tell, information we share or organization we introduce, that it is another link that could be the lifeline for someone else. These stories also help give others a basic foundation of information about a disease so few know anything about. We know that any link we can put out there could catch the eye of someone looking to invest their time, clinical research efforts or even funding into a meaningful cause that could potentially change or save lives, maybe even the course of medical research as it is known.


So with just a few weeks left until we enter a new year, we invite you to join us in finding opportunities to launch conversation about epidermolysis bullosa – whether that means sharing your own story, encouraging others to tell theirs or motivating personal and professional networks to invest in learning more about EB. The collective voices of those with EB, their families, researchers, caregivers, fundraisers, bloggers, Tweeters, authors, nonprofits and other EB advocates – all of these efforts are what have allowed us to start the dialogue about epidermolysis bullosa. We look forward to joining all of them in expanding that conversation further in 2013 and hope you’ll join us.

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