EB Research Partnership
  • Epidermolysis Bullosa
    • What is EB?
    • Life with EB
    • Resources
  • Research
    • Our Impact
    • Scientific Advisory Board
    • Clinical Trials >
      • Filsuvez
      • Vyjuvek
      • ZEVASKYN
    • Town Halls
    • Apply for a Grant
  • Get Involved
    • Donate
    • Sponsor
    • EB Active
    • Events
    • The Effect
    • Shop
    • Give Cryptocurrency
    • Give Stocks
    • Give through Donor Advised Funds (DAF)
    • Accelerator Fund
  • Media
    • Matter of Time Film
    • Press
    • Videos
  • About Us
    • Our Mission
    • Financials
    • Venture Philanthropy
    • Supporter Spotlights
    • Leadership >
      • Board of Directors
      • Staff
  • Donate

Shane: Dystrophic

My name is Shane, and I am a 23 year old guy who loves Star Trek, space, and business. For a few seconds, it’s possible to forget that my body is covered with large wounds, places where my skin has sheared off, a result of my skin condition, Epidermolysis Bullosa (EB).

No matter how much I want to be normal, EB haunts me and affects everything I do. I cannot open doors, walk long distances, eat crunchy foods, hold large things . . . the list goes on.

I am wracked by never-ending debilitating pain that cannot be helped by anything other than the strongest painkillers, which I choose not to take because they cloud the mind. Ibuprofen helps slightly by reducing the inflammation that hurts my body.

Even though my body is scarred by my condition, I recently graduated from Rice University with a degree in Economics. I’m hoping to use my degree to help others in whatever way I can. Additionally, I started a motivational speaking business called ShaneTalks to use my experience with EB to help others overcome their challenges (visit ShaneTalks.com to learn more!). However, I still face enormous difficulties because I cannot be independent with my wrecked hands and fragile skin.

I am very lucky that I was able to go to college. Many others with my condition cannot go to school or even leave the house. We, the butterfly children, need a cure desperately so that we can lead a normal life, whether that means going to college or school or even leaving the house or the wheelchair.

- Shane
Picture

EB Research Partnership

244 Madison Ave Ste 104
New York, NY 10016 
[email protected]
646-844-0902
Careers
​
Donor Privacy Policy

Curator Privacy Policy

Curator Terms of Use
Donate

Contact Us
​

​Our Mission

​Shop

Press
Picture

COPYRIGHT @2025 EB RESEARCH PARTNERSHIP. ALL RIGHTS RESERVED. EB RESEARCH PARTNERSHIP IS A 501(C)(3) NON PROFIT.

  • Epidermolysis Bullosa
    • What is EB?
    • Life with EB
    • Resources
  • Research
    • Our Impact
    • Scientific Advisory Board
    • Clinical Trials >
      • Filsuvez
      • Vyjuvek
      • ZEVASKYN
    • Town Halls
    • Apply for a Grant
  • Get Involved
    • Donate
    • Sponsor
    • EB Active
    • Events
    • The Effect
    • Shop
    • Give Cryptocurrency
    • Give Stocks
    • Give through Donor Advised Funds (DAF)
    • Accelerator Fund
  • Media
    • Matter of Time Film
    • Press
    • Videos
  • About Us
    • Our Mission
    • Financials
    • Venture Philanthropy
    • Supporter Spotlights
    • Leadership >
      • Board of Directors
      • Staff
  • Donate