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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Comments
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Read this this morning. Really glad Today did an article on it. Thanks for posting!0
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Amazing what they've been doing.
Thanks for posting!Let's say knowledge is a tree, yeah.
It's growing up just like me.0 -
Pearl Jam Activism @PJActivism - Shout out @WishlistPJ + @PearlJam fans for supporting the band members' spotlight non-profits, including @EBPartner! http://wishlistfoundation.myshopify.com/products/sticker-causethewave-happybirthdayev-2016?variant=13357696643
Sticker - #CauseTheWave #HappyBirthdayEV 2016
$ 3.00
These beautiful, durable vinyl, clear stickers are 4.5" wide and 3.5" tall.
$3 for 1 sticker or $5 for 2 stickers (plus shipping and handling)
They will benefit the EB Research Partnership, supported by Jill and Eddie Vedder.
Design by Nicole Shyti and Laura Trafton.
Available until January 27, 2016, or until they are sold out.
Beneficiary: EB Research Partnership.
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Mine is on it's way! Gorgeous. Thanks Demetrios for posting!0
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Nice to see this - more media coverage helps donations. Hopefully there will be more.With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be careful. Strive to be happy. ~ Desiderata0
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Beautiful stickers and great cause, win/win
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No problemo. Mine shipped out over the weekend.pearlgirl52 said:Mine is on it's way! Gorgeous. Thanks Demetrios for posting!
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Ordered 2 sets........can't wait! 0
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@ Wishlist Foundation
THE EB STICKERS ARE ALMOST SOLD OUT!
Order here: http://wishlistfoundation.myshopify.com/collections/all
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Ordered
Could only order 1 so they must be very close to selling out....'95: Brisbane BEC March 21 & 22 '98: Brisbane BEC March 14 & 15 '03: Brad Surfers Paradise Troccadero Jan 11
'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 & 250 -
The 2 stickers for 5 dollars is sold out.0
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Stickers arrived! Thanks Wishlist Foundation. 0
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Bumping a thread that really matters. Tomorrow is the deadline! Awesome pictures on facebook.0
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Makes me proud to be a fan. Is there also a FB link; would like to share this.0
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Edit. Will try to get the link later. Can't seem to get it to work while at work.Post edited by pearlgirl52 on0
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My best friend has a 13 year old cousin named John Hudson, he suffers from the worst case of EB, Ed's wife Jill has had contact with them. They are such great people. I have posted a video about him a few years back, always cool to see the link between PJ and someone close to me.2008 - MSG 6/24-6/25
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 5/1-5/20 -
^I hope he is doing okay! I hope this campaign really shines a light on all those cool kids! I can't even imagine what that's like on a daily basis. Sending lots of love to John!0
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Last day bump.0
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So is the FB linked found?0
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