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
Picture
WIN TICKETS

ABOUT THE FILM

Matter of Time is a unique rock documentary capturing the electrifying energy of Eddie Vedder’s October 2023 solo concerts in Seattle, held to raise critical funds for clinical research for Epidermolysis Bullosa (EB) - a rare and debilitating genetic skin disorder that mostly affects children, causing fragile, blistering skin. All proceeds from these concerts went directly to EB Research Partnership (EBRP).

Produced by Door Knocker Media in association with Vitalogy Foundation, Matter of Time blends powerful music with the poignant, real-life stories of patients, families, researchers, and thought leaders, revealing how determination and innovation are paving the way toward a cure.
​

At its heart, Matter of Time is a powerful tapestry of resilience—diving deep into the lives of EB patients, pioneering researchers, and tireless advocates. Their stories are not just about enduring a rare disease but about leading the charge to cure it. Through intimate access and emotional storytelling, the film reveals how a passionate community is redefining what’s possible in medicine and showing the world that with determination, innovation, and unity, even the most challenging diseases can be cured.
READ THE PRESS RELEASE
Eddie Vedder performing at Seattle benefit concert for EB research, featured in Matter of Time
Picture

Tribeca Film Festival Premiere

Matter of Time is an official selection of the 24th Tribeca Festival, taking place June 4-15, 2025, in New York City. With its world premiere scheduled for Thurs. June 12, 2025 at the Tribeca Festival, Matter of Time is poised to bring widespread awareness to EB and highlight the extraordinary movement fighting for a cure. Through intimate footage of the Seattle performances and deeply personal interviews, this documentary is a testament to the power of music, community, and unwavering determination in the face of seemingly impossible challenges. For a limited time, you can enter to win a trip to the Matter of Time premiere at Tribeca Festival and see Eddie Vedder perform!
WIN TICKETS
“This film celebrates our community of courageous patients and families, and highlights the real scientific progress that is happening right now. We are showing the world how rare diseases like EB can be cured, and we hope to take our model to thousands of other rare diseases. Our goal is to raise the visibility of this urgent cause and to inspire others to join us in our mission to cure EB by 2030.”
​

​- 
Michael Hund, CEO of EB Research Partnership -

Eddie Vedder performing at a Seattle concert to support EB research.
Child with Epidermolysis Bullosa smiling, showing resilience despite living with a rare genetic skin disorder.
Filming Eddie Vedder’s benefit concert for the “Matter of Time” documentary.
Child with Epidermolysis Bullosa showing a butterfly necklace, a symbol for EB.
Illustration of a microscope, representing clinical research efforts to find a cure for Epidermolysis Bullosa.
Michael Hund, CEO of EB Research Partnership.
Child gently holding a butterfly, symbolizing hope and the fragile beauty of life with Epidermolysis Bullosa.
Eddie Vedder performing with an acoustic guitar at a benefit concert for Epidermolysis Bullosa research.
Researcher in a lab coat examining samples, dedicated to finding a cure for Epidermolysis Bullosa.
Picture
Picture
READ MORE
Picture
READ MORE
Picture
READ MORE
Picture
READ MORE
Picture
READ MORE
Picture
READ MORE
Picture
READ MORE
Picture
READ MORE
Picture
READ MORE
Picture
READ MORE
Picture
DONATE
Picture

Picture
 At EBRP, we know that in order to do things that haven’t been done you need to be willing to break the mold.

With this innovative business model we’re pioneering a new path forward that will not only revolutionize the way nonprofits operate, but also show the world how cures are found. We don’t just write checks and hope for the best. Instead, we operate like a venture capitalist with a focus on a different kind of ROI, return on impact. We create venture agreements with each project we fund. When those projects succeed, the returns are reinvested back into other promising
research and development projects.

Did we mention the science we fund is also scalable across thousands of other rare diseases? That's right. The impact of every dollar invested at EBRP is multiplied many times over.
Picture
​​Our Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute,  Stanford Social Innovation Review, and more.
Picture
With this business model we are actively transforming the EB landscape while creating scalable impact. These projects, this work, and the way we operate will create a butterfly effect for the 400M+ globally impacted by a rare disease.

Download our Impact Booklet to explore the Harvard Business School and Yale School of Management case studies on EBRP's innovative model and transformative impact.
Download Impact Booklet

Picture
Children with EB are often called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. With skin this fragile, everyday activities that many take for granted like eating, sleeping, walking and playing can become monumental tasks.

​The harsh reality is that rare diseases affect more people than HIV and Cancer combined.

EB is one of over 10,000 rare diseases, 95% of which have no approved treatments or cures. We are focused on finding a cure for EB, but for us that’s just the beginning.
Picture
Picture
Founded in 2010 by a group of dedicated parents, Jill Vedder, and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest nonprofit funding research aimed at finding a cure for Epidermolysis Bullosa (EB).

Over the last decade, we have made remarkable strides, including raising +$60M for life-saving research, contributing to a 20x growth in EB clinical trials, helping to fund the first-ever FDA approved topical gene therapy and treatment for EB families.

The progress we’ve made in EB is undeniable, however, we are only scratching the surface. 

​Our Venture Philanthropy Model is actively transforming the EB landscape while creating scalable impact. These projects, this work, and the way we operate will create a butterfly effect for the 400M+ globally impacted by a rare disease.
Picture
Donate to Life-Saving Research

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