07.24.18 Warren Haynes, John Medeski, George Porter Jr. and Joe Russo Join Together For One-Night-Only
debra of America is proud to announce that GRAMMY® Award-winning vocalist, songwriter and guitar legend Warren Haynes will team with John Medeski, George Porter, Jr. and Joe Russo for a very special, one night only 2-set performance at The Capitol Theatre in Port Chester, NY on October 5th, 2018, to raise awareness of the rare painful genetic disease, Epidermolysis Bullosa, commonly known as EB and “the worst disease you’ve never heard of.”
Tickets for this very special concert go on-sale to the public on Friday August 3rd at Noon EDT via Ticketfly.
EB is a rare disease caused by a mistake in a gene that makes a protein that acts like the glue that holds the two layers of skin together. Unfortunately, children born with the disease aren’t able to make the protein so any friction causes the skin to blister and tear. It’s a very painful disease that requires those who suffer from it to wear very expensive bandages all over their bodies. These bandages can cost more than $1 million a year. As of today, there is no cure or FDA approved treatment. Pain management, wound care and preventative bandaging are the only options.
Based in New York City, debra of America is the only national not-for-profit dedicated to improving the quality of life for those living with EB by doing two things in parallel; funding the most innovative science for a treatment and a cure while providing free programs and services to those living with the disease. The concert is organized by Brett Kopelan, Executive Director of debra of America and the father of a 10-year-old girl with a severe form of EB. “Warren Haynes has always been one of my favorite guitar players and when he put together this incredible group of musicians, I became very excited,’ said Brett. “I knew that with Warren’s help, we would be able to make a lot of people aware of this horrible disease and that is what enables us to push the needle forward on the science to an eventual treatment and a cure.” Says Warren Haynes, “As a parent, I couldn’t help but be moved by the stories I heard from those directly affected by EB. When asked by the fine folks at debra to assist in the mission to both raise awareness about EB and continue to fund research for a cure, I said yes without hesitation. I quickly realized I was not only presented with a great opportunity to help a great cause, but also, if everything lined up, to put together an amazing band for a one-time show. I reached out to Joe, George and Medeski and, luckily, we were all free.”
Revolution Come. Revolution Go
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