Tuesday, October 23, 2012

Night of Discovery & Healing for EB

While the rock and roll lifestyle of the modern musician might seem to be all sound and fury, there are many who take time out from their busy schedule in order to do things for those less fortunate and draw attention to things that need our attention. Eddie Vedder, lead singer of the seminal band Pearl Jam, and his wife Jill are shining examples of that pay-it-forward attitude. They both are drawing some attention to a terrible illness which affects young children.

The Vedder’s both took part in "A Night of Discovery & Healing for EB" recently at Children's Discovery Museum of San Jose. This event happened a day before The Bridge School Annual benefit concert. The evening was an awareness and fundraiser for “Heal EB.”  Heal EB is a nonprofit organization dedicated to finding a cure while raising awareness for Epidermolysis Bullosa.

If you have never heard of EB before, it just sounds dreadful. EB is a painful congenital disease that causes blisters after the mildest trauma. The Myoclonic describes EB:

“Epidermolysis bullosa (ep-ih-dur-MOL-uh-sis buhl-LO-sah) is a group of skin conditions whose hallmark is blistering in response to minor injury, heat, or friction from rubbing, scratching or adhesive tape.”

Maybe the most terrible thing about EB is that children are the ones who suffer from it.

“Most types of epidermolysis bullosa initially affect infants and young children, although some people with mild forms of the condition don't develop signs and symptoms until adolescence or early adulthood. Mild forms of epidermolysis bullosa may improve with age, but severe forms may cause serious complications and can be fatal.”

While the fact that EB may improve with age is one small bit of hope for those diagnosed, that is not always the case. And there still remains no known cure. For most kids who develop EB the treatment is all about dealing with the pain and preventing outbreaks. Kids will be kids though; imagine having had to have lived your whole youth in a bubble; reacting violently and painfully to even the slightest abrasion. Depending on the type of EB, the effects can be mild, disabling, or life threatening. Children with severe cases of the disease oftentimes do not make it to adulthood.

Mrs. Vedder has a dear friend, Heather Fullmer, whose son who suffers from EB. Mrs. Fullmer is CEO and founder of the Heal EB non-profit. Because she was so deeply moved by the pain of these children and the strain they endure, Mrs. Vedder sits on the Heal EB board of directors.

During the night, the Vedder’s made fast friends with a number of children who are grappling with EB. Eddie also got up to do an impromptu performance with the event band, Big Daddy Sunshine. Together they played "Running Down a Dream", "Come Together", and "Rocking in the Free World."

In order to raise awareness and help spread the word, Heal EB has an auction currently up on EBay. The auction is running through 9am Pacific this Friday October 26. There are a number of Eddie Vedder and Pearl Jam items up for grabs, including:

  • - Autographed Eddie Vedder ukulele, autographed Eddie Vedder Deluxe Edition songbook, front row tickets to an upcoming Eddie Vedder solo date (first time front row tickets are being offered for bid)
  • - Eddie Vedder solo tour front row tickets and autographed poster package
  • - 2 autographed Pearl Jam posters (Made in America and Montreal 2011)

There are a ton of other great items from athletes, fellow musicians and others. If you are a fan of the band or if you are interested in getting some cool auction items and helping a great cause like Heal EB you should check out the whole lot and see what strikes your fancy.


Unknown said...

Sorry Jesse Schmitt, but a certain "Jill Vedder" does not actually exist.Google does not include her on Eddie Vedder's profile because such personality cannot stand verification or authenticity.The person you see with Eddie Vedder is his cousin Kathy Davis,girlfriend of Tim Bierman and mother of his 2 kids Olivia and Ruby who are Eddie Vedder's nieces.Just Jeep on with the charity though.

Jesse Schmitt said...

sorry Unknown but I never ID'd the woman in the picture. I take it from very good authority that there is indeed a Mrs. Jill Vedder (formerly Jill McCormick) as you can see here http://tinyurl.com/ctxckz2.

But really it is all about the charity.