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​Zack: Dystrophic

My name is Zack and I am almost 15.  I start my 9th grade year of high school this fall and I also get my driving permit.  I have the opportunity of being 1 of 3 student body officers this year.  It's a great opportunity for me to help make this year successful for the entire student body at my school. I enjoy school and work hard to stay on the honor roll.

Outside of school I enjoy hanging out with my friends and, of course, gaming.  I started biking a few years ago to stay in shape and enjoy going fast. Because I have EB, I ride a recumbent trike that has been modified. This summer I rode in my first bike tour.  Over 2 days, I rode 26 miles, which included summitting Vail Pass in Colorado at an elevation of over 10,000 feet. 

I'm the oldest of 7 children; 4 of us have EB. I try hard to set a good example for all of my siblings.  I know that they watch me and try to do all the things that I do.   

I am pretty sure that even though I have fairly severe EB, if I work hard I will be able to do all of the things I want to do. I know I have to find a different way to do some things, but my family is always there to help me figure that out.
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  • Epidermolysis Bullosa
    • What is EB?
    • Life with EB
    • Resources
  • Research
    • Our Impact
    • Scientific Advisory Board
    • Clinical Trials
    • Community Council
    • Apply for a Grant
  • Get Involved
    • Donate
    • Sponsor
    • EB Active
    • Events >
      • Venture Into Cures
    • The Effect
    • Shop
    • Accelerator Fund
  • Media
    • Press
    • Videos
  • About Us
    • Our Mission
    • Financials
    • Venture Philanthropy
    • Supporter Spotlight
    • Leadership >
      • Board of Directors
      • Staff
      • Founders
  • Donate