Raising Awareness for EB

We are always appreciative of those whose actions and words support EB families and, in the process, attract attention to help make others aware of epidermolysis bullosa and the families it impacts. This month, we’ve selected three different examples of voices who are helping to enlighten and compel others to want to learn more.

  • Jessica Kenley
    The author of the book Kidowed shares what life is like when a mother loses two children to the Junctional Herliz form of EB. Kenley paints a very honest, real and stark picture of life with EB and of the family left behind trying to cope with painful loss. Not everyone has embraced Kenley’s direct approach to storytelling and the sometimes stark language she uses throughout her book, but by telling her story, she broadens awareness of epidermolysis bullosa to a mass market who might otherwise not have heard of the disease. She has continued this conversation with readers on her Facebook page and recently offered readers a free download of her e-book on Amazon.com for a limited time. Click here for more information about the book.
  • Joss & Main
    Recently, the home goods website collaborated with a group of celebrities to create a fun, exciting fundraiser opportunity to raise funds for the Epidermolysis Bullosa Medical Research Foundation (EBMRF). Stars like Courteney Cox, Orlando Bloom and Zoe Saldana agreed to take part in the “Curate for a Cause” event during which each celebrity picks out their favorite pieces of home décor for a month with proceeds from sales of these items being donated to EBMRF. We love it. Shopping, celebrities and helping others — it’s a great combination and a creative way to educate others about EB. Actress Bridget Moynahan launched the first set of celebrity picks in August. Orlando Bloom’s September picks are still available online through today (Oct. 9); Courtney Cox’s picks are on display from Oct. 9-Nov. 6; Zoe Saldana’s run from Oct. 23-Nov.20; and Matthew and Camilia McConaughey’s picks are featured Nov. 6-Dec. 6. For more info about the campaign, go to the Joss & Main site.
  • The community of Auburn, NY
    When Easton Friedel was born in late August in New York’s Cayuga County, one more family received the news that their newborn had been diagnosed with epidermolysis bullosa. During the next few weeks, news spread throughout the family’s hometown of Auburn and through traditional news sites like Syracuse.com, as the local community joined forces to support parents Danielle and Jared with calls, messages, fundraising and other support, including a community-wide prayer vigil. The collective spirit spread online through a Baby Easton Facebook campaign, as reported by social-media commentators Mashable.com, which shared the family’s story online and garnered attention of supporters across the country and around the world. It attracted 27,000 page “likes” in 20 days and raised $63,000 in just five days time for the family’s impending medical bills. Auburn, NY is not unique – there have been other communities who have demonstrated their ability to rise to an occasion and come out in support of one of its own — but it is a great example of just how much a community can do, going well beyond its own city limits to reach out to the world and not only support a family in need but raise significant awareness for a disease so few people know about. Thanks, Auburn, for reminding us of the real definition of community.

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