More EB Champions Worth Celebrating

A little while ago we introduced you to some important advocates and support sources out there speaking up about EB to bring more attention to the disease and spark greater interest and dialogue on the subject. It’s time to recognize a few more of these people we call EB Champions, those who are helping to spread the word and support the community in their own unique ways.

If you have someone to recommend, let us know by emailing me at leslie.rader@hollisterwoundcare.com. And thanks to these folks for all they do to speak up about EB.

Geri Kelly-Mancuso, RN

Sometimes there is no greater support than providing answers. Many EB patients and their families know Geri well, and some of their caregivers know her very well, because the registered nurse has an especially important job at DebRA as its Nurse Educator. She plays a critical role as a point of contact for new parents, patients and healthcare professionals managing care for EB patients. Since Geri also speaks Spanish, she is able to provide additional support to meet the growing demands to reach out to Spanish-speaking families. Her broad pediatrics experience as a school nurse and nurse at South Bronx Children’s Health Center as well as a former Clinical Nurse Manager for the Hope Center at St. John’s Riverside Hospital (Yonkers, NY) makes Geri a very valuable information and support resource for EB families and their caregivers.

Chris Pez Matthai

Not only is Chris one of the driving forces behind the very busy and always helpful Epidermolysis Bullosa Friends network, but he recently demonstrated his dedication with the announcement that he hopes to raise awareness and research funding for EB in yet another creative way. During this year’s EB Awareness Week in late October 2010, Chris has set up for himself the Dare Me to Do Anything for EB Awareness Challenge, for which he is asking people to offer up suggestions for him to bravely take on, as he puts it “one crazy dare” to raise funds for the organization, United Survivors with Epideromolysis Bullosa. We like that no matter what the needs are for EB patients and their families, Chris is always there in the lead to champion the effort and lend a hand!

Alfred T. Lane MD

Dr. Lane is a professor and current Chair of Dermatology at Lucile Packard Children’s Hospital at Stanford. Specializing in pediatric dermatology, he has been one of a small group of leading researchers in the study of epidermolysis bullosa and in fact is conducting a study for which his team is currently recruiting subjects, specifically DEB patients (http://dermatology.stanford.edu/research/research.html). Dr. Lane also 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. (http://www.youtube.com/watch?v=c2S-IV6oZ_E) By becoming one of the medical community’s key voices on the subject, Dr. Lane provides additional education about EB for the public and for those directly impacted by the disease.

Andre J. Hermann

On his own website (www.andrehermannphoto.com), Andre calls himself a documentary photographer, and his work definitely captures a poignancy in this stark depiction of a day in the life for a young EB patient named Garrett and his mom through telling black and white images. In fact, Hermann transformed his photos into a documentary, “Garrett: The Boy Beneath the Bandages,” which won a special award for 2010 Rare Disease Day U.S. Through his work, he sheds light on the subject of epidermolysis bullosa in a very provocative and compelling way. Check out Part One, Part Two, and Part Three of the documentary.