An all-star event will be held online on Thursday in an effort to raise money and awareness about a terrible disease that impacts the lives of children and adults around the country— including the family of a respected Toledo business owner.
Venture into Cures 2021 will be broadcast on the EB Research website on Thursday, November 18 at 8pm. Hosted by Tom Holland, the show will feature appearances by celebrities such as Jack Black, The Jonas Brothers, Selena Gomez, Gonzo from the Muppets and many more. Performances by Brandi Carlile, Ed Sheeran, Pearl Jam and others will also take place.
The event is being held by the EB Research Partnership to raise money for research into epidermolysis bullosa, a rare disorder that causes the skin to become very fragile and prone to open wounds. The condition is estimated to affect 1 in 30-50,000 people, with varying degrees of severity.
“Eddie Vedder started [the EB Research Partnership] to raise money— he has a friend who has a child that had EB, so he got real interested in it,” said Paul Stark, owner of Toledo-based Diamond’s Mens Shop. “And we have a grandchild that has it, so that’s how we know about it. And it’s the most horrific thing you’ve ever seen in your life.”
Stark’s step-grandchild deals with such a severe form of the disorder that her parents have to spend anywhere from 2-7 per day on wound care alone. Every other day involves giving her a particularly painful bath.
“They have to do it so she won’t get infections, because her skin is open wounds,” Stark said.
The EB Research Partnership is the largest organization dedicated to funding research into EB. Given how the disorder is genetic in nature, Stark and many are hopeful that a cure for EB may lead to other promising discoveries.
“If they can cure this through gene therapy, because it’s [caused] by a defective number seven chromosome, they can learn how to fix other diseases, too. And there’s thousands of them. So it would be a major in-road to all kinds of genetic disorders,” Stark said.
To register to watch Venture into Cures 2021, visit https://ebresearch.brandlive.com/venture-into-cures-2021/en/registration.
