A Little Birdie Told Us

We always learn so much from the members of the EB Resource Facebook community. Recently, we listened in to hear what folks were saying and wanted to share some highlights. And if you haven’t had an opportunity to visit lately, we invite you to do so. It’s a strong, smart and caring group of people who only want to help educate and support one another. We hope you’ll stop in and say hello.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

  • Recently, we encouraged members of the community to reach out to us if they would like to tell their own EB story. We found out that one member Derra Nicole Sabo had already taken a very big step to do just that. “I have written a book with my family about what it’s like living with EB. It’s called EB…Some Call It Epidermolysis Bullosa, I Call It Extraordinarily Beautiful,” she writes. Thanks for sharing, Derra!
     
  • In April, we asked members what they felt was the most misunderstood thing about living with EB and received a lot of feedback. A few members especially chimed in agreement with member Elizabeth Schwartz. “It’s no big deal, they’ll grow out of it, a change in diet would help or a new lotion. I mostly hate when people, especially family, don’t acknowledge the difficulty or special needs my kids have,” she says. Jessica Tilldal agrees and notes, “People try to be nice by saying ‘hopefully it’ll get better when she grows up’ when in fact it might be quite the opposite…frustrating!” How would you answer that question? Feel free to share your own thoughts.
     
  • We also wanted to pass along to others some recommendations for EB-friendly clothing brands worth a peek online or in person, and as usual, the community didn’t disappoint with helpful suggestions. Jamie Grossman Silver shared that she had made a recent find: “I just discovered a brand called City Threads. Incredibly soft and seams are very gentle.” Josie Tripp offered her own suggestion – “Carters and kicky pants” – and Teri Bienvenu noted some places that have worked for her family: “Gap and Old Navy fleece have always worked for us. Target and A Children’s Place have tag-free cotton shirts and we do crocs for shoes.” Kathryn Foster recommended “New Balance Shoes. They come in extra wide widths to accommodate bandages” as well as Hanes tag-less boxer briefs. If you missed our original question posed, do you have any suggestions to offer?
     
  • So many of you told us how much you enjoyed the recent Q&A with the charming Stevie Hislop in a two-part blog as she shared honest and open insight as a young adult living with EB. We’re happy to share that we’ll be featuring another wonderful Q&A with a pivotal person in the community who’s done much to support our families, so look for that next week. And when we did reach out and ask you for suggestions of future people to profile, you shared your suggestions and we took notice and hope to feature more EB advocates and supporters in future blogs. So stay tuned for next week and in the months to come.
     
  • We also welcome it when members want to share news about an upcoming campaign or fundraiser. For example, in April, Jeanne Appleton announced to our community that the Scott Ward Schofield Memorial Fund was holding a Facebook Awareness Day online event for the charity on May 18. Similarly, Amy Tunmire Wehr shared news of an online fundraiser for Save Jax that ran April 4-27 to benefit young Jackson Baldwin of Youngstown, NY. We like to think of our community as a powerful, loving circle of friends, and what do you do in the company of friends? You share, you encourage and you support. If you have an announcement about an upcoming event that all of us in the EB Resource community can get behind and spread the word about in our own circles, please let us know on Facebook or email me directly at leslie.rader@hollisterwoundcare.com.

EB Champions, We Salute You!

We’re ready to strike up the band and let loose with the fireworks during this patriotic month of star-spangled marches and celebrations to honor a trio of EB advocates and who are seeking greater support and attention for EB patients and their families. We consider them EB champions and applaud their independent streak and fierce drive to lead the charge for raising EB awareness.

· Alison Ganson
Following the death of her son Scott last November, Ganson launched a new nonprofit, the Scott Ward Schofield Memorial Fund, with the help of friends and family. The intention, as articulated on the group’s website, is “to make dreams come true” by sending EB patients and their families across the world to “make memories that will last forever.” Ganson has channeled what could be solely a time of grief and sorrow into an opportunity to help other families create treasured memories with their children, and we think that’s courageous. As she shares background about her son Scott, Ganson notes at her website, “The photographs I have and the memorials of all those special times help me get through every day. I want others to have the same opportunities as Scott … I want their families to have what I have, treasured memories of a special child.” For more information about the fund or to donate, please visit the organization’s website or call the Manchester, England-based group at 0792-087-5564.

  • Miss Walking Tall 2011 Sarah Stonier
    We were thrilled when we learned that a pageant participant from Knoxville had selected as her platform for the Miss Tennessee competition—a preliminary pageant leading up to Miss America—the goal of raising awareness and research dollars for epidermolysis bullosa. Though she may not have landed the state or national crown, as the reigning Miss Walking Tall 2011 of her homestate, Sarah Stonier continues to spread the word about EB by leading the charge and initiating conversations about what she has termed EMBRACE (Epidermolysis Bullosa Research, Awareness, Cure and Education). We’ll have more on Stonier soon in an upcoming blog Q&A with the dedicated young woman. In the meantime, you can follow the reigning Miss Walking Tall at her Facebook page by clicking here.
  • Alex, Jamie and Jackson Silver
    After learning of an EB diagnosis for their son Jackson upon his birth in October 2007, Alex and Jamie Silver were faced with the same challenges as other families—what to do next to raise a child with epidermolysis bullosa. But this determined young couple took these challenges that lay ahead and embarked on a personal mission, launching the Jackson Gabriel Silver Foundation in honor of their son (now, over three and half years old) in an effort to, as they put it on their own website, “support the brilliant research focused on finding a cure for EB that will give Jackson, and other children afflicted with EB, a chance.” We tip our hat to the Silvers for seeing more than a hard road ahead but instead seeing a path they can help clear for others to come by focusing energy and attention on raising clinical research funds. For more information about how to get involved or donate to the fund, email info@jgsf.org.

Sources:

Scott Ward Schofield Memorial Fund

Miss Walking Tall, Sarah Stonier, Facebook

Jackson Gabriel Silver Foundation

Related Posts:

Celebrating Moms Making a Difference

We Appreciate These EB Champions

We Heart These EB Champions