A $1 million matching gift from Dr. Jeff Heddles will double every donation, turning momentum from Matter of Time, the new Netflix documentary about Epidermolysis Bullosa (EB), into accelerated research progress.
NEW YORK, Feb. 27, 2026 /PRNewswire/ — EB Research Partnership (EBRP), the largest global nonprofit dedicated to funding research to treat and cure Epidermolysis Bullosa (EB), just announced the Matter of Time $1 Million Match – a $1,000,000 matching gift from philanthropist Dr. Jeff Heddles to double all donations beginning Feb. 26, 2026, until the match is achieved. The match was first shared with the EB community during EBRP’s Behind the Film: Matter of Time Town Hall and brings powerful momentum three weeks into the organization’s Matter of Time documentary premiering on Netflix and in celebration of global Rare Disease Day (Feb. 28).
EB is a rare, painful genetic disease that makes skin as fragile as butterfly wings. Nearly 95% of the 400 million people living with a rare disease still have no FDA-approved treatment, but EB is now among the small fraction of rare diseases with three or more FDA – approved therapies, showing what’s possible when research is funded with urgency, accountability and an innovative business model.
Inspired by Matter of Time and a Community Showing Up Worldwide
Dr. Heddles began supporting EB Research Partnership (EBRP) in 2022 after attending a Pearl Jam concert brought EB to his attention, when he noticed a young boy onstage, joyfully playing tambourine, wrapped in bandages. After learning more about EB and doing his own due diligence into EBRP’s model, he became a major donor and advocate, supporting the mission through philanthropy and leadership across the community. Since then, he has activated multiple matching campaigns to help accelerate progress. This is his largest match to date, inspired by EBRP’s Chicago Matter of Time special screening and the film’s global Netflix launch, introducing EB families and the fight to cure EB to audiences worldwide.
“Matter of Time captures what I’ve come to believe deeply. Progress happens when people show up, again and again, by refusing to look away. And we can see that progress happening,” said Dr. Jeff Heddles. “This match is my way of transforming a moment of attention into real momentum, fueling the research that can deliver a cure for EB and showing how EBRP’s model can accelerate breakthroughs for thousands of other rare diseases. To every family living with EB, you are not alone. And to anyone who’s been watching this movement from the sidelines, I hope this makes it clear. The work is real, the momentum is here, and together we can push it forward faster.”
Across the EB community, families, researchers, and advocates expressed deep gratitude for Dr. Heddles’ continued leadership and generosity and for the momentum this match brings to the progress already underway.
“As a father of a child with EB and a board member of EBRP, I want to thank Dr. Jeff Heddles for his incredible generosity with the Matter of Time $1 Million Match.” said Nathan Burmeister, EBRP Board Member and father to Jacob, a young boy with Recessive Dystrophic Epidermolysis Bullosa (RDEB). “After being moved by the outpouring of support for previous matches, he has stepped up in an even bigger way. Beyond that, Jeff has traveled the world to support EBRP, including visiting us here in Australia. His unwavering commitment to the EB community means more than words can express. We are deeply grateful for everything he’s done to help bring us closer to treatments, and a cure, for EB.”
A Catalytic Match to Accelerate What’s Next
The Matter of Time $1 Million Match is designed to accelerate research and clinical progress at a moment of growing global momentum, giving supporters a direct way to turn awareness into tangible action for EB families who cannot afford to wait. The match reflects a deep belief in what’s possible when urgency meets a proven model for impact, and invites more people to help push progress forward.
“Dr. Heddles’ leadership is exactly how breakthrough progress happens,” said Michael Hund, CEO of EB Research Partnership. “This match is a bold invitation to the world. If you were moved by Matter of Time, now is the moment to turn that emotion into action. Every matched dollar helps us move faster, funding research and clinical progress with the urgency EB families live every day. On behalf of our entire community, a profound thank you to Jeff for his catalytic and transformational leadership”
Momentum, Progress, and Measurable Traction
The announcement comes amid global attention generated by Matter of Time, the Netflix documentary following Pearl Jam frontman Eddie Vedder and a determined community working to cure EB. The film spotlights EBRP’s Venture Philanthropy approach, applying investing principles to research grants so that when a therapy succeeds, EBRP can share in that upside and reinvest it into new EB research, helping philanthropy compound over time. That leadership has drawn independent recognition from Harvard, Yale, MIT, Cambridge, Stanford, the Milken Institute, and Forbes.
Since the organization’s founding, EBRP has helped accelerate three FDA-approved EB treatments, funded 189+ research projects, and helped drive 50+ active EB clinical trials worldwide. In 2025 alone, EBRP invested more than $4.6 million across research and programs, and the organization has seen over 60% year-over-year revenue growth. Now, the match offers a clear next step for viewers and supporters to turn attention into research progress.
How the Match Works
Beginning Feb. 26, 2026, all donations to EB Research Partnership will be matched dollar-for-dollar – effectively doubling each gift until the $1,000,000 match is achieved.
About EB Research Partnership (EBRP)
Founded in 2010 by a dedicated group of parents, along with Jill and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research to treat and cure Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth.
EBRP utilizes an innovative, award-winning Venture Philanthropy model that is accelerating progress in EB and pioneering a path that can help other rare diseases move faster.
To learn more or donate to the match, visit ebresearch.org.
About Matter of Time
Matter of Time is a feature documentary chronicling the fight to cure Epidermolysis Bullosa (EB), weaving together patient stories, scientific breakthroughs, and the power of music, set against the backdrop of benefit concerts organized by Eddie Vedder.
To learn more or watch, visit matteroftimefilm.com.
Assets
Teaser Trailer: youtube.com/watch?v=De6AQFZtk4Y
Press Kit (Clips, Stills, Artwork): tinyurl.com/mvffk389
Social: @MatterOfTimeFilm | @EBResearch
For Media Inquiries, Please Contact: ID PR on behalf of Matter of Time
MatterOfTime@IDPR.com
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SOURCE EB Research Partnership
