EB in the News

A lot has changed since we first launched the EB Resource blog a little more than 3 years ago. Finding links to anything related to epidermolysis bullosa was difficult — not that it’s gotten easy to do, but in 3 years’ time, there are definitely far more people talking about EB than there were before.

 

Each time we go online and find a new YouTube video or an article about a family hosting an EB-related fundraiser or a link to a local TV news outlet's story about a family faced with EB, we are encouraged. Our whole goal has been to start a dialogue across the country about EB, and our daily mission is to present these little snippits of conversations to our community to help further the talk within our own circles, our own schools and neighborhoods. And we’re definitely getting there.

 

In the past year, we’ve watched people across the country come together in support of young parents facing the loss of their children to EB — parents like inspiring mom Courtney Roth whose son Tripp prompted many to hold EB awareness rallies and fundraisers. We have witnessed prayer vigils and virtual campaigns to support families going through the touch-and-go nature of clinical trials like the Knuth family, as son Charlie underwent stem cell replacement at a Minnesota children’s hospital and faced both victories and setbacks throughout the process.

 

We are reminded each time we produce our own blogs that each new story we tell, information we share or organization we introduce, that it is another link that could be the lifeline for someone else. These stories also help give others a basic foundation of information about a disease so few know anything about. We know that any link we can put out there could catch the eye of someone looking to invest their time, clinical research efforts or even funding into a meaningful cause that could potentially change or save lives, maybe even the course of medical research as it is known.

 

So with just a few weeks left until we enter a new year, we invite you to join us in finding opportunities to launch conversation about epidermolysis bullosa – whether that means sharing your own story, encouraging others to tell theirs or motivating personal and professional networks to invest in learning more about EB. The collective voices of those with EB, their families, researchers, caregivers, fundraisers, bloggers, Tweeters, authors, nonprofits and other EB advocates – all of these efforts are what have allowed us to start the dialogue about epidermolysis bullosa. We look forward to joining all of them in expanding that conversation further in 2013 and hope you’ll join us.

EB Champions Worth a Cheer

Nothing pleases us more than to discover new voices out there trying to raise awareness or support for those directly impacted by epidermolysis bullosa. We call them our EB Champions, and we’ve got another trio to recognize for the work they’re doing to help others become more familiar with the disease and introduce them to organizations raising funds for EB research. In addition, some of these champs have figured out a way to use their talents to directly support EB families, and we think that’s worth celebrating. Kudos to all of them for what they are doing.

  • Kristina Wyatt and EBAwareness.com
    At her website EBawareness.com (www.ebawareness.com), the self-described “EB ambassador” describes her life as simple, fulfilling and busy, and regards her children as her greatest achievements, but we think what she’s doing to help the EB community is terrific. This IT professional by day who claims graphic design and web development are just hobbies has launched not only a website but a Facebook page to publicize fundraisers and awareness events, as well as promote special campaigns, including a successful EB Awareness Bracelet Campaign. Wyatt is a perfect example of someone investing in a cause she feels passionate about and using her skills to educate and network with others who are on a similar mission.
     
  • Christie Zink and This Little Light
    When photographer and founder of Elan Images Photography Christie Zink met up with Tripp Roth this past year, she was inspired by his spirit which she captured so beautifully in pictures with his mother Courtney. Wanting to make a difference in the lives of families like the Roths to provide long-lasting memories through her unique form of visual storytelling, she partnered with a Minnesota charity to create the project This Little Light to provide custom portrait services to these families. Though Tripp has since passed, she says on her blog that his spirit continues to shine and inspire her to raise EB awareness. And we think that she has a real gift for shining the spotlight on the beauty, love and spirit of those she photographs, and we encourage those in the community to share information about this great project with EB families you may know. What a wonderful gift …
     
  • The Scanlon Family
    Recently, Liz and Gary Scanlon opened their doors to documentary filmmakers to share their lives as parents of now 4-year-old Claudia, who was diagnosed at birth with EB. DEBRA Ireland has since uploaded the documentary, Touched by a Butterfly, in two parts on YouTube.com. (Click here for part two.) Viewers not only get an honest portrayal of what living with EB looks like but also see firsthand how friends, family members and schools can support a family, as those in the lives of the Scanlons work together to support Claudia and her parents. We are so thankful for families like the Scanlons for their willingness to share a thoughtful and sensitive depiction of life with EB. It’s definitely worth checking out and sharing with others.

 

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