EB Voices on a Mission

The EB community is brimming with supportive people who have figured out the best way to use their talents and platform to make a difference in the lives of families impacted by the disease. We like to occasionally use our blog to recognize those efforts both as a way to share our gratitude for their creativity and determination as well as to inspire others to find their own unique path to do some good for EB families. For May, a month associated with celebrating some very special women — moms everywhere — it seems appropriate that most of the EB voices being celebrated in this blog are moms or daughters on a mission to support the EB community.

  • Elaine Fuchs, stem cell pioneer
    Fuchs recently earned the highest scientific honor awarded for her groundbreaking work in stem cell research. She has been hailed as the first scientist to biochemically characterize keratin and then go on to clone identified strands in her lab. Click here for a recent article to learn more about a woman who has truly helped the EB research community make tremendous strides.
  • Dozier-Libby Medical High School “Super Students”
    On the surface, Iliana Azevedo, Cassie Pambid, Maria Romero and Diana Sanchez might simply appear like typical teenagers or high school students but a recent school project that implored them to “Be the Change” was precisely the inspiration they needed. The group ventured into learning more about something many people knew nothing about — epidermolysis bullosa. Once they did, they felt compelled to do more and so they did, and raised $2,000!
    Click here to learn about this group of amazing students in a recent article.
  • Patrice Williams
    As a mom both to 6-year-old Jonah Williams who lives with EB every day and a toddler, Patrice Williams is one busy lady but she continues to be a regular voice as a mommy blogger in the in the EB community with her Before the Morning blog. And just this weekend coming up, she and husband Matt will host their fourth annual Jogging for Jonah event in Tanglewood Park in Clemmons, NC. Proceeds benefit DebRA of America. Click here for details about the event. Kudos to Patrice and her family for doing their part to remind us that no matter how busy our lives can get, there is always a way to come together and do something good for others, too.

These are only a few of the awesome people who are making a difference in the lives of others here in the EB community. There are many more and we will continue to introduce them to you on a regular basis on our blog.

If you are involved in any upcoming EB fundraisers or awareness events, or know organizers who are, please send us the information so we can share it with our friends on Twitter and Facebook, as well as here on the blog. Just email me at leslie.rader@hollisterwoundcare.com.

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