Cause The Wave: Eddie Vedder and the EB Research Partnership

demetrios · October 2014

Eddie Vedder of Pearl Jam discusses Epidermolysis Bullosa, a devastating skin condition, along with Dr. Jakub Tolar, a leading researcher, and brave kids and grownups who battle EB every day. Learn more at ebresearch.org and donate at donate.ebresearch.org/

https://player.vimeo.com/video/107776206

jjflash · October 2014

Got watery watching this. Really puts things into perspective. Made me want to go hug my kids and contribute to the research fund. Thank you Ed and Jill for shedding light on EB.

demetrios · October 2014

jjflash · October 2014

Needs a sticky *-:)

green_girl · October 2014

Thumbs up. It's amazing how good-natured they all are.

PureandEasy · October 2014

jjflash said:
Got watery watching this. Really puts things into perspective. Made me want to go hug my kids and contribute to the research fund. Thank you Ed and Jill for shedding light on EB.

That's such a heartbreaking result of the affliction, the parents can't hug their children. I can't even imagine.

Give what you can. Every child needs hugs.

EnterThanman · October 2014

PureandEasy said:

jjflash said:
Got watery watching this. Really puts things into perspective. Made me want to go hug my kids and contribute to the research fund. Thank you Ed and Jill for shedding light on EB.
That's such a heartbreaking result of the affliction, the parents can't hug their children. I can't even imagine.

Give what you can. Every child needs hugs.

I agree, I couldn't imagine how hard it would be to cause harm to my daughter through a hug. Incredibly sad.

Beautiful little clip, and awesome of Ed to lend his profile and time to the cause. Will definitely be donating.

RunIntoTheRain · October 2014

This needs to stay on the front page

demetrios · October 2014

Bump!

For those who can't view Vimeo clips ..

http://www.youtube.com/watch?v=QSJvD6msRoo&feature=youtu.be

demetrios · October 2014

Pearl Jam Activism ‏@PJActivism

Eddie Vedder wants you to learn about some kids who have a disease you've never heard of (via @upworthy) http://www.upworthy.com/eddie-vedder-rock-star-wants-to-talk-to-you-about-this-kids-future-hed-like-to-have-one-am2-4c?g=4

Eddie Vedder, Rock Star, Wants To Talk To You About This Kid's Future. He'd Like To Have One.
Adam Mordecai Curated by Adam Mordecai

Epidermolysis Bullosa is a disease I had never heard of until today. 30,000 people in the United States today have it. It essentially makes your skin and organs extremely fragile. Children with it have their fingers slowly fused together into mitten shapes. Skin that is cut never heals. Families can spend as much as $14,000 a month on bandaging alone. Athletic and physical activities are out of the question. They are prone to skin cancer. And one of them happens to be friends with Pearl Jam's Eddie Vedder. And so he started a foundation you should learn about. They're doing research that could impact 5000 rare genetic disorders impacting 10% of the globe's population.

weddingparade · October 2014

i am going to donate to this. good on ed.

Longueuil · October 2014

Ed took the time today to visit the UMN

Great to see #EddieVedder of @PearlJam, @PrezKaler, @KFKaler, @EBPartner and our #EpidermolysisBullosa team together!

Beautiful! #EddieVedder of @PearlJam and @EBPartner visit our patients fighting #EpidermolysisBullosa! #CauseTheWave

From : https://twitter.com/UMNChildrens

demetrios · October 2014

@PJActivism Tonight Eddie Vedder sang this during Corduroy "Can't buy what I want because it's Heal EB"! #CauseTheWave #EBPartner #PJActivism #PearlJam

demetrios · October 2014

For those who have Facebook ..

@PJActivism

You can help #CauseTheWave & #HealEB. Follow @EBPartner on Facebook here: http://bit.ly/eb-research-fb

demetrios · February 2016

https://www.facebook.com/183819478299560/photos/a.259005040781003.81089.183819478299560/1218569398157891/?type=3&theater

@ EB Research Partnership

We are so grateful for meeting so many smart, dedicated and passionate people in Seattle last night to share our mission to #healeb. Our Seattle board members, Aaron Blank and Jill and Eddie Vedder of Pearl Jam hosted a beautiful dinner. We look forward to what is next! #causethewave

pearlgirl52 · February 2016

Good job, guys. Thanks for keeping this updated Demetrios!

demetrios · April 2016

https://www.facebook.com/183819478299560/photos/a.259005040781003.81089.183819478299560/1253887567959407/?type=3&theater

@ EB Research Partnership

Have you purchased your @PearlJam tickets? Our Co-founder @Eddie Vedder and the Vitalogy Foundation will donate $3 from every ticket sold to fund our work and several other awesome causes! http://ow.ly/10q7PI

Pap · April 2024

https://www.youtube.com/watch?v=OqXl-6pcW5I

demetrios · August 19

https://x.com/EBResearch/status/1957872788095517151

EB Research Partnership

@EBResearch

BREAKING TODAY: EB families stood on the floor of the

@NYSE

this morning as we rang the Opening Bell This moment wasn’t just symbolic, it was a powerful call for visibility, urgency, and hope in the fight against EB. Together, we’re turning awareness into action and pushing closer to cures. Photo Creds: New York Stock Exchange More photos to come! #NYSE #EBResearch

Cause The Wave: Eddie Vedder and the EB Research Partnership

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