When we first started this blog back in late 2009, we had a small community. So many people still had not heard of epidermolysis bullosa at that time. It’s been a mission for many of us to change that, and in four-plus years, it has. There are definitely more families, more communities and more researchers involved in spreading the word about EB. Here are just three of some EB voices who have been very influential in educating others about EB.
- Andrew and Shawn Ripps Tavani. The Tavani family has been a consistent supporter of EB families through its various fundraisers for DebRA. Since daughter Ellie was born with EB in 2006, the Tavanis have been reaching out to their community and beyond to raise funds for an organization that helped them through its various support programs and continues to do so. The Tavanis coordinate fundraisers through Butterfly Wishes for Ellie including an EB Awareness Walk and their main annual silent auction fundraiser to be held this year on Thursday, May 22 in Atlanta. Click here for more details.
- Geri Kelly, RN. Just as the Tavanis are educating communities about EB through their events, DebRA’s on-staff Nurse Educator Geri Kelly, RN, is educating anyone who may come into contact with an EB patient, to ensure they have the necessary information about the disease and to serve as a valuable resource for questions about care and needed supplies, particularly with those unfamiliar with the disease or what care may be required. As Nurse Educator, Kelly plays a vital role as a point of contact for parents of newly diagnosed children with EB, patients still trying to fully understand their condition, and healthcare professionals and caregivers managing care for EB patients. Click here to read more about her role at DebRA.
- Alfred T. Lane MD. As a professor and Chair of Dermatology at Lucile Packard Children’s Hospital at Stanford University, Dr. Alfred Lane has been one of a small group of research leaders in the study of epidermolysis bullosa. He has become a key voice in the discussion of EB, continuing to educate others in healthcare, the scientific community and the general public about the disease and its impact. Specializing in pediatric dermatology, he continues to lead clinical trials through the University and has participated in videotaped interviews on the subject of EB that have since been made available on sites like YouTube for online learning and distribution of information. Click here to view one such interview.