EB Research Partnership
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EB Research Partnership funds research to find treatments and a cure for Epidermolysis Bullosa (EB)🦋
One year ago today, Matter of Time premiered at Tribeca Film Festival.
Since then, this story has traveled from sold-out theaters to a 40-city theatrical run, watch parties, living rooms, national press, and Netflix, bringing thousands of people closer to the EB community and the urgent fight for a cure.
Because of this film, supporters from 46 states and 11 countries have joined the mission. More than 1,000 first-time donors have stepped forward. And today, we’re 90% of the way to closing the $1 million Matter of Time Match.
Driven by music. Carried by community. Fueled by hope.
Thank you to everyone who has watched, shared, donated, and helped turn awareness into action for those with Epidermolysis Bullosa.
🦋 Watch Matter of Time on Netflix.
06/10/2026
A moving story about Paul Seddon and his daughter, who lives with EB, and the creative outlet they’ve built together through assemblage art.
For his daughter, the process of making and selling their pieces is more than art therapy, Paul shared that it gives her “a sense of achievement and self confidence.”
While working on a new piece, they discovered a hidden letter inside a vintage sewing machine, uncovering its history and adding another layer of human connection to their story.
Newsweek:
Man dismantles vintage sewing machine, discovers letter hidden inside Paul Seddon and his daughter had planned on dismantling the sewing machine for one of their art pieces. Then they found something.
06/09/2026
A powerful story about the Davis family, who honored what would have been Hallie Grace’s 5th birthday with their annual Butterfly Ball. Hallie Grace lived with EB and passed away at just three months old.
Through Heroes for Hallie Grace Inc., her family continues to raise awareness, fund EB research, and support families throughout their EB journey. 🦋
Family celebrates daughter’s 5th birthday with fundraiser for rare genetic condition Family celebrates daughter’s 5th birthday with fundraiser for rare genetic condition
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244 Madison Avenue Ste 104
New York, NY
10016
Opening Hours
| Monday | 9am - 5pm |
| Tuesday | 9am - 5pm |
| Wednesday | 9am - 5pm |
| Thursday | 9am - 5pm |
| Friday | 9am - 5pm |
