Thanking Those Who Spread the Word


Thanksgiving is a time during which many of us attempt to slow down (except during meal preparation) to remind ourselves what we have to be thankful for, so we think this is a perfect time here at EB Resource to do some thanking of our own.


When we set up EB Resource nearly five years ago, one of our core goals was to help members of the EB community connect with one another as well as with resources available to them in the medical, nonprofit and medical supply fields. We would not be able to set out to achieve this goal every day if it weren’t for the following invaluable people.


  • Nonprofits devoted to supporting EB Awareness and support for families impacted by the disease – From DebRA and EBMRF to EB Research Partnership and I Refuse EB, and several other grass roots organizations and groups of various sizes, these groups and individuals have dedicated themselves to finding their own unique niche for drawing more attention to the cause and raising funds for the particular need they hope to address. Each may have its own distinct goals and strategies but there is one tie that binds them all and that is a collective commitment to take action and inspire others to join in a movement to support the EB community.
  • Medical and Educational Institutions which have committed resources to EB research – Physicians and scientists are more readily joining forces on both the care and research fronts to develop and test new and improved treatments and explore potentially groundbreaking trials in the hopes of finding a cure for the disease. With care and research teams committed at such innovative institutions as University of Minnesota, University of Cincinnati Children’s Center and Stanford University, among others, many of us in the EB community remain hopeful that these brilliant minds will uncover new and promising developments.
  • Parents and Other EB Caregivers who share their story in the media, in their communities and online to educate others – We frequently share on EB Resource posts that spotlight EB families from across the world who have reached out to their local media to gain greater attention for their story and for the EB community as a whole. Each time a new link is cataloged on Google and other search engines, we offer another window for a glimpse at life with EB. Though we know that every story does not capture the same poignancy, accuracy or depth of the story, we are still encouraged that a growing number of media organizations are beginning to dig deep into the EB story, and we owe it to the many parents and caregivers who have shared their own family’s struggles through these articles, their own blogs or books to educate others about epidermolysis bullosa.
  • Supporters within and outside of the EB community who participated this year and in our past EB Tweetathons – We place much value on circles of influence and regardless of how you use your own social media accounts, so we thank those Twitter users who relay our annual messages during EB Awareness Week to their online friends and followers to help us educate and motivate others to get involved in raising EB awareness. We know it can take time, energy and diligence to retweet them all, but some of you do all that you can to make it happen and we so appreciate all who have taken part. Thank you!
  • Other Supporters, whether in manufacturing, the arts, business or other sectors – Messages continue to move out into the mainstream media from sources as diverse as Pearl Jam frontman, Eddie Vedder to tennis great, Mats Wilander to medical supply companies and large corporations, college groups, playwrights, photographers, actors and more who find unique ways to use their forum, audience or talents to shine a different light on EB and the people affected by it.


We are grateful to all of you for the many ways you’ve used your tools and voices to speak up for the EB community. And during this month of thankfulness, we hoist a mug of cinnamon-tinged apple cider or pumpkin-spiced latte around the dinner table of our EB community.


Thank you for all you do.

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