ABOUT THE FILM
|
|
|
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!
|
|
“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 - |
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.
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.
|
Our Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute, Stanford Social Innovation Review, and more.
|
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 our Impact Booklet to explore the Harvard Business School and Yale School of Management case studies on EBRP's innovative model and transformative impact.
|
|
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. |
|
|
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. |
