Christine Zink, 37, is a passionate advocate for children who suffer from Epidermis Bullosa (EB), a rare but devastating and painful disease. She's also a photographer and mom of three. You can see Zink's work and learn more about EB on her blog, This Little Light.
Hometown: Melrose, Minnesota
Hero: Dr. Jakub Tolar is one of the most inspiring people I have ever encountered. He is currently conducting groundbreaking research to help find a cure for EB. Dr. Tolar is continuously striving to make life better for kids with EB despite the challenges and setbacks. I admire him on so many levels, and I am so honored to be able to support him in various ways. He is providing hope where there once was none...hope is a beautiful gift.
Inspiration: I am constantly inspired by the people I advocate for, those living with the daily challenges and pain of EB as well as their parents and caregivers. They have tremendous courage, strength and fortitude; they persevere more than most of us could even imagine.
Goal: We all want a cure for EB, but because it is so rare, affecting only one in 50,000, it lacks the funding that is so critical for research. So, for the time being my focus is primarily on raising awareness, supporting families, and fundraising. I recently started working with Pioneering Unique Cures for Kids (PUCK, www.puckfund.org), an organization devoted to funding research for EB at the University of Minnesota. My goal is to be an effective ambassador for families and for those who suffer. I also use the "I Refuse" campaign (www.irefuseeb.org) to raise awareness nationwide.