About Project Zebra
Project Zebra was started by Lizzy Kee (an EDSer herself) in 2014 as part of the Biomedical Sciences Program through PTLW at Campo Verde High School in Gilbert, AZ. In this program, students are required in their senior year to complete a Capstone Project. The students are asked to find a problem in the world that has to do with the medical field and create, and then implement, a solution to that problem. Lizzy also did a project on EDS her junior year, creating a medical documentary as part of this same program (the video featured on the home page of this site). Through the production of this documentary, Lizzy found inspiration for her Capstone in the form of a comment on a Facebook support group post:
“It is bad when I go in and have to teach doctors
(an absolute list of specialists even) how I need different care.”
Dawn S. (AZ, USA), 2013
Lizzy then began her senior year with the goal of educating medical professionals about EDS. She changed her project to focus more on the problem of patients finding good information about EDS online, as she found herself that it was hard to find infomation, even with the researching skills she was taught in school. Thus, Project Zebra was born.
Project Zebra is a web-based education campaign to provide doctors, patients, and the general public with easily accessed, high-quality information to better understand Ehlers-Danlos Syndrome (EDS). The inspiration for this came through personal experiences with the syndrome and through the stories of other EDS patients, and their struggles to find accurate information. True need for the solution was inspired by interviews with forerunners in the Ehlers-Danlos field, as well as multiple patient accounts. A thorough understanding of EDS is crucial to the treatment of the syndrome and accurate information can be difficult to find online. This website is aimed to help provide access to free info without hours of searching and vetting by the patient. The goal of this project is to increase the knowledge base of Ehlers-Danlos in the medical community to allow for better treatment of affected patients. Future goals are for an education campaign aimed at medical professionals most likely to see the syndrome in their practices to help combat the issue of inadequate education. Support from local institutions and medical practices for spreading the word about the project is currently being sought.
Special Thanks To:
•Dr. Peggy Pearson for being my mentor and fact checker
•Dr. Bradley Tinkle for helping narrow down my focus on how to solve my problem
•Dr. Harry Dietz for all his wonderful help and support
•Allen Gruver, PT, for helping me focus my problem in order to solve it
•The Ehlers-Danlos Support Group on Facebook for inspiring my project
•Lathisha Nair and Samantha Sitarik for being my marketing and design gurus
• Barbara Torrey for having as much enthusiasm about this project as I do
