EB Research Partnership Launches $1 Million Match to Accelerate Treatments and Cure

Dr. Jeff Heddles' matching gift will double all donations to EB research starting February 26, 2026.

Feb. 27, 2026 at 4:35pm

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EB Research Partnership (EBRP), the largest global nonprofit dedicated to funding research to treat and cure Epidermolysis Bullosa (EB), has 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.

Why it matters

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. This match aims to further accelerate progress towards treatments and a cure for EB.

The details

Dr. Heddles began supporting EBRP in 2022 after attending a Pearl Jam concert that brought EB to his attention. He became a major donor and advocate, supporting the mission through philanthropy and leadership across the community. This is his largest match to date, inspired by EBRP's Chicago Matter of Time special screening and the film's global Netflix launch. The 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.

  • The Matter of Time $1 Million Match will begin on February 26, 2026.
  • The Match will continue until the $1,000,000 goal is achieved.

The players

Dr. Jeff Heddles

A philanthropist who has been a major donor and advocate for EB Research Partnership since 2022, supporting the mission through philanthropy and leadership across the community.

EB Research Partnership (EBRP)

The largest global nonprofit dedicated to funding research to treat and cure Epidermolysis Bullosa (EB), a rare, painful genetic disease.

Nathan Burmeister

An EBRP Board Member and father to Jacob, a young boy with Recessive Dystrophic Epidermolysis Bullosa (RDEB).

Michael Hund

The CEO of EB Research Partnership.

Eddie Vedder

The Pearl Jam frontman who co-founded EB Research Partnership in 2010 with a dedicated group of parents.

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What they’re saying

“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.”

— Dr. Jeff Heddles

“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.”

— Nathan Burmeister, EBRP Board Member and father to Jacob, a young boy with Recessive Dystrophic Epidermolysis Bullosa (RDEB)

“Dr. Heddles' leadership is exactly how breakthrough progress happens. 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.”

— Michael Hund, CEO of EB Research Partnership

What’s next

The judge in the case will decide on Tuesday whether or not to allow Walker Reed Quinn out on bail.

The takeaway

This 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 towards treatments and a cure for EB forward faster.