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.

Mommy Bloggers and the EB Community

Mommy blogger communities have emerged across various parts of the country as a powerful voice and growing sphere of influence, as consumers, as parents and as citizens and neighbors. But in the EB community, these bloggers seem to have truly embraced a very significant role to play: as members of an intricate support system and knowledge base.

For the past several years, I’ve watched the EB community grow as more and more families have become actively involved in raising awareness and research dollars. That has also included witnessing the EB voice of only a handful of parents of children with EB, grow into a much louder one comprised primarily of mothers looking out for not only their children but other families within the community, as well. And even when some of these voices have been momentarily silenced after the deeply personal and devastating loss of a child, many of them have promptly returned to the blogging community to continue speaking out for the community through their blog.

In other blogger communities, moms often focus on finding better solutions – maybe it’s more affordable baby supplies, a better-made garment or a suggestion for a pediatrician, local hair stylist or family-friendly neighborhood restaurant. If you scan some of the more active EB mommy blogs, you’ll see it’s not much different, but perhaps the focus is on wound care supplies, EB-friendly clothing sources and suggestions for flexible locales to take out the whole family and ensure a fun, safe visit for all.

There are so many wonderful mommy bloggers in the EB community, we couldn’t possibly have a favorite but we’ve been touched by the different ways these wonderful moms have transformed into great communicators and leaders, from Patrice Williams to Sara Denslaw to Courtney Tripp Roth, just to name a few.

For those of you that follow specific mommy blogs in the EB community, who have you chosen to follow regularly and why? What was it about their specific blogs that compelled you to return or even interact with the mother behind the blog? And for any of our EB mommy bloggers who may be reading this, we’d love to hear from you, too. Why do you make such a commitment of time and energy to be a participating mommy blogger in the EB community? What do you feel you get back in return for that investment?

To all of the bloggers out there – moms, dads, those diagnosed with EB themselves who wish to share more about their experience, educate or connect with others, I just want to say thank you for all you do to help define EB to the world and bring more attention to its deep impact.

Celebrating Moms Making a Difference

With Mother’s Day around the corner, we thought it might be nice to take this time to wish all of the moms in the EB Resource community a very special day and celebrate the great work that EB moms are doing to help spread the word about the disease, as well as share with others the need for research support. Every time a mom of a child with EB raises her voice, whether she too was diagnosed with the disease or not, she has the potential to seriously impact the lives of these patients, young and old, and their families.

We want to mention and thank the following trio of moms for all that they do to help make a difference. And what do all of these women have in common? Each is sharing her personal story in her own words through blogs that can serve as powerful tools to reach out to the community to educate others about EB, support other families facing similar challenges, and get people talking. That’s why they join our growing list of EB Champions.

Sources:

“EB”ing A Mommy, Courtney Roth Blog

“EB”ing a Mommy, Tangi Lifestyles Magazine (April/May 2011)

Before the Morning, Patrice Williams Blog

Four Busy Bees and Two Little Butterflies, Sara Denslaw Blog

In Garrett’s Memory

Related Posts:

We Appreciate These EB Champions

We “Heart” These EB Champions

Thankful for These EB Voices