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

​Join the Plunge for Elodie and help kids fight rare skin disorder

3/15/2025

 
The 8th annual Plunge for Elodie is scheduled for March 22 at 10:30am at Wellesley’s Morses Pond to raise awareness and funds regarding the rare, life-threatening genetic skin disorder Epidermolysis Bullosa. More than 20 such events will be held across six countries with a fundraising goal of $600K. The Plunge for Elodie was created by 10 childhood friends of Elodie’s mom, Emily Kubik. Elodie was born in 2016 with a severe form of EB. Kids with EB are called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. They face severe pain, open external and internal wounds, and a grueling daily bandaging process.
Picture
read more

Comments are closed.

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
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
    • Apply for a Grant
  • Get Involved
    • Donate
    • Ways to Give
    • The Effect
    • Sponsor
    • Events
    • Town Halls
    • Shop
    • Accelerator Fund
  • Media
    • Matter of Time Film
    • Press
    • Videos
  • About Us
    • Our Mission
    • Financials
    • Venture Philanthropy
    • Supporter Spotlights
    • Leadership >
      • Board of Directors
      • Staff
  • Donate