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


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