EB Champions Worth Celebrating

From time to time, we like to recognize individuals and organizations helping to raise awareness about epidermolysis bullosa and attention and funding for continued research. This month’s featured community contributors are finding their own unique ways to initiate the conversation. How can we take their cue and get others learning and talking about EB in our own respective neighborhoods?

  • Lotus Tissue Repair
    This privately held pharmaceutical company first entered our radar when we learned that they were the sole corporate sponsor behind the new EBCare Patient Registry, a collaboration of DebRA International and DebRA of America, which is the first and only web-based registry currently available for reporting the disease. (In this video, DebRA International COO John Dart answers questions about the new registry and discusses the various ways it could be valuable.) Overall, such an endeavor offers hope for the collection of a greater amount of more accurate and robust data, which could impact interest from researchers, government officials and other private businesses and encourage other corporate entities like Lotus Tissue Repair to get more involved in efforts to better treat and ultimately cure EB.
     
  • Wyoming Magnolias
    Recently, in a feature story about them in the Casper Journal, we learned about a fabulous foursome who have found a creative way to spread the word about EB with their upcoming community theater benefit, a production of “What Were We Talking About?” On July 20, Gale Alexander, Vickie Cawthra, Gretchen Wheeler and Linda Stoval, known in the Casper community as the “Wyoming Magnolias,” will perform the original two-act play onstage. Alexander’s own granddaughter Joella was born with EB, and proceeds from the production will benefit DebRA of America. The play itself is not about EB but we applaud these awesome ladies for finding a unique and entertaining way to use their theater skills and interest to create a memorable, fun fundraiser to introduce EB to the community in a very personal and meaningful way. Those interested can click here for tickets.
     
  • Participants on DebRA of America’s Family Stories page
    We love the Family Stories section of the DebRA website, which gives individuals a chance to share their own story, often in their own words. We’ve tried to capture the voices of the EB community through our own “Sharing Our EB Story” blog series. But this section of the DebRA site introduces people of various ages and backgrounds to share their own perspectives about EB. From adults with EB like recent bride Monique to Melissa, a young mom raising a young son also diagnosed with the disease, to the Williams family and son Jonah who frequently blog about a day in the life with EB, collections of stories like these can help us better support one another. They can also help us to cultivate an environment of tolerance and understanding for those just learning about EB for the first time.