Ed gets on board research campaign after meeting 9 year old boy with life-threatening skin condition
http://www.9news.com.au/entertainment/2016/01/06/08/55/eddie-vedder-gets-on-board-research-campaign-after-meeting-boy-with-skin-condition
Pearl Jam's Eddie Vedder, his wife Jill with Mikey Fullmer and his parents, and Dr. Alan Lane. Ryan Fullmer and Jill Vedder. (Image: Shannon Montez/Today.com)
FTBCA
A nine-year-old boy whose skin is so fragile even hugs can be life-threatening is holding out for a cure for the rare and extremely painful condition – and he has the lead singer of one of the world’s most famous rock bands on his side.
Mikey Fullmer of Irvine, California has had two operations and multiple hospitalisations due to the connective tissue disease epidermolysis bullosa, Today.com reports.
“Every little movement, even swallowing, is extremely painful, his mother, Heather Fullmer said.
“Sometimes, even the bandages actually harm him”.
But despite his skin being as fragile as butterfly wings, Mikey is full of life, with dreams of becoming a scientist to “make inventions to help the world get better”.
And his dreams are in sight, due to a lucky friendship Mikey’s dad made as a kid.
Ryan Fullmer was a childhood friend of Jill Vedder, the wife of Pearl Jam frontman Eddie Vedder.
After meeting Mikey, the Vedders launched Heal EB which was last year merged with the Gabriel Silver Foundation to form the EB Research Partnership which has raised $6 million so far.
"When I met Mikey, I saw what he was going through," Jill Vedder said.
“It’s devastating.’
"Ed mentioned EB at a show in Las Vegas and people started bringing money to him on stage," Ms Vedder said. "So he went through his Rolodex and started calling friends."
On the top of the list were the Dixie Chicks, Foo Fighters and Tom Petty, as well as New England Patriots power couple Tom Brady and Gisele Bundchen.
Researchers are now working to develop synthetic proteins to help keep the layers of skin intact, as well as exploring gene-editing technology to allow the body to create its own collagen.
© ninemsn 2016
Read more at http://www.9news.com.au/entertainment/2016/01/06/08/55/eddie-vedder-gets-on-board-research-campaign-after-meeting-boy-with-skin-condition#7HSySJqY5qES735z.99
Pearl Jam's Eddie Vedder, his wife Jill with Mikey Fullmer and his parents, and Dr. Alan Lane. Ryan Fullmer and Jill Vedder. (Image: Shannon Montez/Today.com)
FTBCA
A nine-year-old boy whose skin is so fragile even hugs can be life-threatening is holding out for a cure for the rare and extremely painful condition – and he has the lead singer of one of the world’s most famous rock bands on his side.
Mikey Fullmer of Irvine, California has had two operations and multiple hospitalisations due to the connective tissue disease epidermolysis bullosa, Today.com reports.
“Every little movement, even swallowing, is extremely painful, his mother, Heather Fullmer said.
“Sometimes, even the bandages actually harm him”.
But despite his skin being as fragile as butterfly wings, Mikey is full of life, with dreams of becoming a scientist to “make inventions to help the world get better”.
And his dreams are in sight, due to a lucky friendship Mikey’s dad made as a kid.
Ryan Fullmer was a childhood friend of Jill Vedder, the wife of Pearl Jam frontman Eddie Vedder.
After meeting Mikey, the Vedders launched Heal EB which was last year merged with the Gabriel Silver Foundation to form the EB Research Partnership which has raised $6 million so far.
"When I met Mikey, I saw what he was going through," Jill Vedder said.
“It’s devastating.’
"Ed mentioned EB at a show in Las Vegas and people started bringing money to him on stage," Ms Vedder said. "So he went through his Rolodex and started calling friends."
On the top of the list were the Dixie Chicks, Foo Fighters and Tom Petty, as well as New England Patriots power couple Tom Brady and Gisele Bundchen.
Researchers are now working to develop synthetic proteins to help keep the layers of skin intact, as well as exploring gene-editing technology to allow the body to create its own collagen.
© ninemsn 2016
Read more at http://www.9news.com.au/entertainment/2016/01/06/08/55/eddie-vedder-gets-on-board-research-campaign-after-meeting-boy-with-skin-condition#7HSySJqY5qES735z.99
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Thanks for posting!
It's growing up just like me.
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$3 for 1 sticker or $5 for 2 stickers (plus shipping and handling)
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'03: Brisbane BEC Feb 8 '06: Brisbane BEC Nov 10 & 11 '09: Brisbane QSAC Nov 25
'11: EV Solo Brisbane QPAC March 10, 12 & 13 '11: PJ20 Alpine Valley Sep 3 & 4
'14: Gold Coast BDO Jan 19 EV Solo QPAC Feb 22, 23 & 25
2010 - Newark 5/18 MSG 5/21
2011 - PJ20 9/3-9/4
2012 - MIA Festival 9/2
2013 - Wrigley Field 7/19 Brooklyn 10/18-10/19 Philly 10/22
2015 - Colbert show - 9/23 Global Citizens Festival 9/26
2016 - Philly 4/28-4/29 MSG 5/1-5/2
EB Research Partnership
Seattle Children's Hospital CEO Jeff Sperring met with some of our Co-Founders, Pearl Jam's Eddie Vedder, Jill Vedder and Alex Silver, to discover the ways we could partner to #HealEB. Promising things are underway... #CauseTheWave — at Seattle Children's Hospital.