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.

We Appreciate These EB Champions

We’re constantly reminded that no one will get the word out about epidermolysis bullosa to our legislators, to our educators and to our neighbors unless we help contribute to the collective voice of the EB community. These people are doing that in their own unique way, and for that we applaud and thank them!

Maybe you know someone in your family or community who has been making an outstanding contribution by raising awareness about EB. Send us an email at leslie.rader@hollisterwoundcare.com and tell us why you think others should know about the work they’re doing to help individuals and families living with EB.

  • Befriend EB. Led by founder Julie Turner and executive director Todd Stalinski, the nonprofit organization has been raising money for over twenty years to directly support families for the daily expenses incurred due to EB, such as wound dressings, ointments, at-home care, special clothing, wheelchairs or other mobility equipment, nutritional supplements and more. Earlier this year, Befriend EB held its annual Butterfly Ball and continues its Butterfly Ball bracelet fundraising campaign to support those living with EB by offering financial assistance and getting the word out about their organization and the disease.

· The University of Minnesota Amplatz Children’s Hospital. The facility has been getting much press recently for the exciting things its Blood and Marrow Transplant team is doing with stem cell-based treatment for EB patients, and the program is touted as the only one currently being offered in the world. The treatment uses a mixture of donor stem cells to add missing proteins within the patient’s skin layers with the program focused on children diagnosed with the severest forms of EB, primarily recessive dystrophic and junctional EB. Led by John E. Wagner, M.D. and Jakub Tolar, M.D. Ph.D., the EB program at UM’s Amplatz Children’s Hospital features a comprehensive team of clinical experts across various specialties including dermatology, infectious diseases, anesthesiology, pediatric surgery, pain management, nutrition, gastroenterology and nephrology. These doctors and researchers continue to seek new ways to develop safer, more effective treatments for EB patients and frequently share their findings to help shed light on what still is, to many in the medical community, a condition shrouded in mystery.

  • The Knuth Family. For the past few months, we have followed one news story more closely than we may have ever followed a news story before because we anxiously awaited (and in some cases, prayed for) a successful outcome for young Charlie Knuth of Darboy, Wisconsin., following his recent stem cell transplant to treat EB. His family has been interviewed and featured in countless TV news stories and articles covering not only the procedure and recovery process, but also the prior lengthy legal proceedings. The state evaluated Charlie’s Medicaid eligibility for the costly procedure, and the case played out as a major state and national news story for weeks. Surely the stresses of seeing your child undergo such a complex procedure, as well as coping with the media attention during what would normally be such a private experience, had to be difficult. But Trish and Kevin Knuth have used the opportunity to educate others wherever possible, and latest reports indicate that young Charlie is truly showing tremendous progress since the transplant. We send this tough little fighter our love and best wishes and thank these proactive parents for showing such strength and courage as they share their story with the world.

Sources:

Befriend EB

EB Program at Univ. of Minn. Amplatz Children’s Hospital BMT

Charlie Knuth Making Progress One Stride at a Time

Related Posts:

We Heart These EB Champions

Thankful for These EB Voices

More EB Champions Worth Celebrating

Celebrating EB Family Advocates & Supporters