Charlie Knuth. PC: Fox 11 Online
DARBOY, WI (WTAQ-WLUK) – What do Pearl Jam rocker, Eddie Vedder, and a Darboy family have in common? The answer is unfolding in the documentary “Matter of Time.”
For years, Northeast Wisconsin embraced Charlie Knuth. The boy from Darboy was born with Epidermolysis Bullosa or EB, a rare genetic skin disorder.
“When I went and met Charlie in the hospital when he was two weeks old and he was just this little baby you know bandaged up full of Vaseline, I mean I didn’t even know what the next day would you know what would happen the next day and he just kept thriving and thriving and as that happened you know then the science started moving along,” said Charlie’s mom, Trisha Knuth.
The science receiving a boost from Pearl Jam front man Eddie Vedder and his wife, Jill. The two starting the EB Research Partnership, raising awareness and funds to help cure EB.
That work and the families they’re helping, including the Knuths who have adopted another daughter Meili who also has EB, are featured in that Netflix documentary.
“If raising funds and raising awareness, if those things are able to fuel the process on the scientific end of finding a cure and how to apply it, it feels like just a matter of time,” said Vedder in the documentary.
According to Matt Finlin, the documentary’s director, “The meaningful work is doing this. It’s been a privilege, the privilege of my life, I would say to get to know these families and these researchers and be part of this like a very small part of moving the needle hopefully to ultimately curing this.”
As the documentary shows, the work of the EB Research Partnership is moving the needle.
Trisha Knuth said, “Before EB Research Partnership, I mean, there was nothing. There was zero research done. No doctors were interested in doing anything because it was such a rare disease. And after they got involved, it literally fast-tracked the science and now we’ve got to have three FDA approved treatments, multiple clinical trials going on.”
The documentary giving hope to those living with the disorder and those who love them.
“It’s helping us to find a cure closer for kids who want to do their dreams and life and have fun,” said Meili Knuth. She added, “And I think it’s pretty cool that it’s out on Netflix and everyone can see it and you’ll know about EB.”
Something the Vedders hope to be able to cure sooner rather than later.
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