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#CauseTheWave to #HealEB PJ Fan Movement

Foxy MopFoxy Mop Posts: 2,823
edited May 2015 in The Porch
UPDATED:January 13, 2015

Share your love on Valentine's Day and help #CauseTheWave to #HealEB!

Wishlist Foundation is sponsoring a global fundraiser event to raise awareness about EB, (Epidermolysis Bullosa), a devastating group of life-threatening skin conditions that affects children from birth and currently without a cure, and funding for EB Research Partnership.

EVENT LOCATIONS:
Worcester, MA - http://bit.ly/maebvd
Reading, PA - http://bit.ly/paebvd
Chicago, IL - http://bit.ly/ilebvd
Seattle, WA - http://bit.ly/waebvd

We are seeking Pearl Jam fans interested in organizing an event in their own home town, much like our preparty fundraisers.

As always, the fundraisers will have

- t-shirts, stickers, buttons and more for donation
- raffle items
- auction items
- Pearl Jam menu (where available)
- more things to come...

If you're interested in hosting a fundraiser, please contact us at wishlistfoundation@gmail.com


---------------------------------------------------------------------------
WHAT
EB—or Epidermolysis Bullosa—is devastating, and currently without a cure. EB is a group of life-threatening skin conditions that affects children from birth.

An individual with EB lacks a critical protein that binds the layers of skin together. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and wounds that never heal. EB affects the body inside and out. Blisters occur all over the body, as well as in the eyes, mouth, esophagus, and other internal organs. EB causes severe pain, disfigurement, and in too many cases, an early death from an aggressive form of skin cancer. It is estimated that EB affects at least one in every 20,000 births. EB is not specific to any ethnicity or gender. Given that EB affects only 30,000 people in the US, advancing this research relies on the generosity of individuals and corporations.

WHO
EB Research Partnership (co-founded by Jill & Eddie Vedder, Jamie & Alex Silver and Heather & Ryan Fullmer) is $5M away from advancing a life-changing treatment and potential cure for EB.

A treatment that would let boys like Mikey and Garrett just be able to be kids without pain and physical limits. A cure that would let Jen take her two master degrees and go to work. A cure based on a methodology that could be applicable to heal 5400 other genetic diseases.

EB Research Project (EBRP)
Website: http://ebresearch.org
Website: http://causethewave.org

http://youtu.be/QSJvD6msRoo

December, 2014
From EB Research Partners:
[quote]Garrett Spaulding, an EB ambassador, is helping us spread some very exciting news!! An anonymous donor will give EBRP up to $25,000 to increase our social networks. For every person who "Likes" our Facebook page we'll receive $1.

Join this exciting challenge! Help us reach an additional 25,000 people and receive a $25,000 grant! Share this message with your friends on Facebook and ask them join the movement.

We only have until December 31st to take advantage of this awesome opportunity. Help us ‪#‎causethewave‬ and ‪#‎healEB‬!

Thank YOU for your support over the past year. It is because of our community of supporters that we've raised $2 million this year! Please help us continue to spread the word about EB, and find a cure! Share this post with your friends. Every addition "Like" on our Facebook page is $1. Let's reach $25k! [/quote]

http://youtu.be/EtFgzXGKA3E

You can #CauseTheWave to #HealEB by liking them on Facebook or following them on Twitter.

LIKE the EB Research Partnership page on Facebook at:
http://www.facebook.com/pages/EB-Research-Partnership/183819478299560

FOLLOW EB Research Partnership on Twitter
http://twitter.com/EBPartner

===========================================

WISHLIST FOUNDATION & PJ FANS

October, 2014
In support of #HealEB, EV and Pearl Jam, Wishlist Foundation decided to sponsor a surprise fan activism movement for the St. Paul show, the city where the children's hospital where they are doing major research and work to find a cure for EB is located.

Our goals were:
- Educate fans about EB.
- Instruct and distribute 10,000 gauze bandage wristbands and white tyvek wristbands for the St. Paul Pearl Jam concert
- Motivate fans to wear both gauze bandage wristbands and white tyvek wristbands & raise hand in the air at the beginning of the first encore of the St. Paul PJ show
- Encourage Pearl Jam fans to Facebook, Tweet, Vine and socially post photos of themselves wearing their wristband using #CauseTheWave and #HealEB

We used social media and this video to help get the word out about #CauseTheWave:
http://youtu.be/S0XJGiNOnHI

We didn't quite reach our goal of 10,000, but we definitely rocked the boat on creating awareness. The executive director of EBRP, Alex, and Jill Vedder got wind of our efforts and came down to the Wishlist Foundation preparty fundraiser and were excited to see what we were up to. The preparty fundraiser was hosted by Tony Doffin and benefited another amazing children's organization called Hope in Grace as well as the Pearl Jam charities. Unfortunately, during the show at the first encore, EV couldn't see the wristbands on the hands raised in St. Paul.

Eddie spoke about EBRP at the St. Paul show - check out the video:
http://youtu.be/T4jzMedOIBw
http://youtu.be/otg5Yyg_-SE

Eddie later mentioned HealEB and the fan efforts at the Milwaukee show.
http://youtu.be/tNp6pEqXzwE

Check out some photos of fans helping to #CauseTheWave:
http://youtu.be/EbOylBGbED8

December, 2014
We asked Pearl Jam fans to participate in a campaign to wish Eddie Vedder a happy 50th birthday and help #CauseTheWave. There was over 65 videos submitted and 170 wristbands distributed in the US and 78 internationally. We were very grateful to have EB Research Partners and Pearl Jam Activism involved!



If you're on Facebook, check out the #CauseTheWave Pearl Jam Fan Movement group here: https://www.facebook.com/groups/1550702101816555/

If you're interested in participating, shoot us an email at wishlistfoundation@gmail.com or post here.
(Please don't send PM's, I don't check them regularly. Thanks!)

Thanks,
Laura
☆ Wishlist Foundation ☆

This is my kind of love...
♥♥♥
Post edited by Kat on
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Comments

  • whispering handswhispering hands Under your skin Posts: 13,527
    You guys are awesome!
  • backseatLover12backseatLover12 Posts: 2,312
    edited November 2014
    While I thoroughly love the passion that EV has for ending EB, and gave $10 for the last chance to donate (for a chance to win seats for the private EV show), I cannot continue to support his personal mission. I've been completely inspired by PJ and their socially responsible actions for the past decade and from them, I've found my own voice in spreading awareness towards my personal missions that need their own awareness and funds. And I actually think that the band just might applaud my perspective. At least that's what I prefer to think.

    So, Eddie Vedder, please understand that my family has it's own fight against the world, with my child's disability, and from an accident years ago, my own disability. Good luck towards reaching your goal, I am there in spirit, but must do the leg work in helping causes that hit closer to home.
    Post edited by backseatLover12 on
  • AndySlashAndySlash Posts: 3,254
    this was real cool to be a small part of. thank you for your efforts in bringing it to st. paul. it was great to hear ed acknowledge it in milwaukee as well.
  • whispering handswhispering hands Under your skin Posts: 13,527
    backseatLover12 said:

    While I thoroughly love the passion that EV has for ending EB, and gave $10 for the last chance to donate (for a chance to win seats for the private EV show), I cannot continue to support his personal mission. I've been completely inspired by PJ and their socially responsible actions for the past decade and from them, I've found my own voice in spreading awareness towards my personal missions that need their own awareness and funds. And I actually think that the band just might applaud my perspective. At least that's what I prefer to think.

    So, Eddie Vedder, please understand that my family has it's own fight against the world, with my child's disability, and from an accident years ago, my own disability. Good luck towards reaching your goal, I am there in spirit, but must do the leg work in helping causes that hit closer to home.

    Believe me, your effort was well received, and it is completely understandable that you have your own needs to look after. No need to apologize or feel you haven't given enough, the fact that you have given in the situation described above, is commendable! Every tiny piece helps. So I am sure the board of this movement is greatly appreciative of your support. :-)

    I myself will do my best to find something to help. Even if it is just volunteering. Though my poor WL people may have second thoughts, since I tried to take on leading with the Denver show, just as my life fell apart.. So.. We'll see what happens, but I truly love seeing people in Ed's position using that stays and place to being awareness to the atrocities in life that we can help and be a part of solving. It is all about working together for the greater good.. So no matter what you are able to offer, even just your time.. It is precious to this cause..

    Side note. There is a boy whose parents attend Church with my family. And he has this EB. Until you SEEEEEEEE this stuff it is really un fathomable!! Three years old, can't play, you can barely hold him.. But THE sweetest happiest kid ever!
  • Foxy MopFoxy Mop Posts: 2,823
    AndySlash said:

    this was real cool to be a small part of. thank you for your efforts in bringing it to st. paul. it was great to hear ed acknowledge it in milwaukee as well.

    Glad you got to be involved in whatever way - that's all it takes :) There's lots of ways to participate in our new campaigns too if you're interested. I'll keep this thread updated with what we're doing.

    Laura
    ☆ Wishlist Foundation ☆

    This is my kind of love...
    ♥♥♥
  • Foxy MopFoxy Mop Posts: 2,823
    backseatLover12 said:

    While I thoroughly love the passion that EV has for ending EB, and gave $10 for the last chance to donate (for a chance to win seats for the private EV show), I cannot continue to support his personal mission. I've been completely inspired by PJ and their socially responsible actions for the past decade and from them, I've found my own voice in spreading awareness towards my personal missions that need their own awareness and funds. And I actually think that the band just might applaud my perspective. At least that's what I prefer to think.

    So, Eddie Vedder, please understand that my family has it's own fight against the world, with my child's disability, and from an accident years ago, my own disability. Good luck towards reaching your goal, I am there in spirit, but must do the leg work in helping causes that hit closer to home.

    I'm sorry to hear you have your own battles to wage - it's never easy - but I'm glad that you were inspired enough to start doing your own thing. That makes your story inspiring to others too.
    whispering hands said:


    I myself will do my best to find something to help. Even if it is just volunteering. Though my poor WL people may have second thoughts, since I tried to take on leading with the Denver show, just as my life fell apart.. So.. We'll see what happens, but I truly love seeing people in Ed's position using that stays and place to being awareness to the atrocities in life that we can help and be a part of solving. It is all about working together for the greater good.. So no matter what you are able to offer, even just your time.. It is precious to this cause..

    Side note. There is a boy whose parents attend Church with my family. And he has this EB. Until you SEEEEEEEE this stuff it is really un fathomable!! Three years old, can't play, you can barely hold him.. But THE sweetest happiest kid ever!

    It's absolutely tragic to hear some of the stories from the parents of these kids and how much of a struggle all of them face every single day. I can't even fathom a situation like that with my own kid - it'd definitely unimaginable.

    Even if you feel like just showing up and/or supporting online, it makes a big difference and goes a long way. #HealEB has a lot of advocacy and awareness that still needs to be done and that every person involved matters. <3
    ☆ Wishlist Foundation ☆

    This is my kind of love...
    ♥♥♥
  • backseatLover12backseatLover12 Posts: 2,312
    whispering hands said:

    backseatLover12 said:

    While I thoroughly love the passion that EV has for ending EB, and gave $10 for the last chance to donate (for a chance to win seats for the private EV show), I cannot continue to support his personal mission. I've been completely inspired by PJ and their socially responsible actions for the past decade and from them, I've found my own voice in spreading awareness towards my personal missions that need their own awareness and funds. And I actually think that the band just might applaud my perspective. At least that's what I prefer to think.

    So, Eddie Vedder, please understand that my family has it's own fight against the world, with my child's disability, and from an accident years ago, my own disability. Good luck towards reaching your goal, I am there in spirit, but must do the leg work in helping causes that hit closer to home.

    Believe me, your effort was well received, and it is completely understandable that you have your own needs to look after. No need to apologize or feel you haven't given enough, the fact that you have given in the situation described above, is commendable! Every tiny piece helps. So I am sure the board of this movement is greatly appreciative of your support. :-)
    Thanks!

    I realize people are so wrapped up in the band that giving to their causes makes sense. But what really makes more sense is that we find a cause near and dear to each of us and focus on helping those causes, the causes that don't make much money and that don't have much help. Those are the causes that need the most help. I think EV has done just fine with EB. But let's not all funnel our money in one direction because we love the man. It should be because we actually care for the cause (but I can tell you have personal experience with EB, so cheers to you!)
  • backseatLover12backseatLover12 Posts: 2,312
    edited November 2014
    .
    Post edited by backseatLover12 on
  • Foxy MopFoxy Mop Posts: 2,823
    From EB Research Partners:
    Garrett Spaulding, an EB ambassador, is helping us spread some very exciting news!! An anonymous donor will give EBRP up to $25,000 to increase our social networks. For every person who "Likes" our Facebook page we'll receive $1.

    Join this exciting challenge! Help us reach an additional 25,000 people and receive a $25,000 grant! Share this message with your friends on Facebook and ask them join the movement.

    We only have until December 31st to take advantage of this awesome opportunity. Help us ‪#‎causethewave‬ and ‪#‎healEB‬!

    Thank YOU for your support over the past year. It is because of our community of supporters that we've raised $2 million this year! Please help us continue to spread the word about EB, and find a cure! Share this post with your friends. Every addition "Like" on our Facebook page is $1. Let's reach $25k!

    http://youtu.be/EtFgzXGKA3E

    You can #CauseTheWave to #HealEB by liking them on Facebook or following them on Twitter.

    LIKE the EB Research Partnership page on Facebook at:
    http://www.facebook.com/pages/EB-Research-Partnership/183819478299560

    FOLLOW EB Research Partnership on Twitter
    http://twitter.com/EBPartner
    ☆ Wishlist Foundation ☆

    This is my kind of love...
    ♥♥♥
  • Foxy MopFoxy Mop Posts: 2,823
    Wishlist Foundation hosted a campaign for Pearl Jam fans to wish Eddie Vedder a Happy 50th Birthday and to help him ‪#‎CauseTheWave‬ to ‪#‎HealEB‬ for EB Research Partnership.

    It's an honor to have the support of EBRP and Pearl Jam Activism on this campaign and you guys have outdone yourselves. We've received over 65 different videos and have distributed almost 200 #CauseTheWave wristbands for Ed's birthday. ‪#‎EV50‬

    Right now, EB Research Partnership will receive $1 for every new LIKE on their Facebook page, so you can still help them out!

    Thanks to Jason Leung for putting this video together and to all the fans who participated.

    Happy Birthday, Ed & #CauseTheWave!

    http://youtu.be/oBFTo6SGKkI
    ☆ Wishlist Foundation ☆

    This is my kind of love...
    ♥♥♥
  • pearlgirl52pearlgirl52 Posts: 653
    I was thrilled to have a small part in the #CauseTheWave video and it turned out really well! First video I ever posted. Hope people really start talking about EB!
  • Foxy MopFoxy Mop Posts: 2,823
    edited January 2015
    Share your love on Valentine's Day and help #CauseTheWave to #HealEB!

    Wishlist Foundation is sponsoring a global fundraiser event to raise awareness about EB, (Epidermolysis Bullosa), a devastating group of life-threatening skin conditions that affects children from birth and currently without a cure, and funding for EB Research Partnership.

    We are seeking Pearl Jam fans interested in organizing an event in their home town, much like our preparty fundraisers.

    As always, the fundraisers will have

    - t-shirts, stickers, buttons and more for donation
    - raffle items
    - auction items
    - Pearl Jam menu (where available)
    - more things to come...

    This will be main global event page, and each city fundraiser will their own event page.

    If you're interested in hosting a fundraiser, please contact us immediately here or at wishlistfoundation@gmail.com

    EVENT LOCATIONS:
    Worcester, MA - http://bit.ly/maebvd
    Reading, PA - http://bit.ly/paebvd
    Chicago, IL - http://bit.ly/ilebvd
    Seattle, WA - http://bit.ly/waebvd
    Post edited by Foxy Mop on
    ☆ Wishlist Foundation ☆

    This is my kind of love...
    ♥♥♥
  • Foxy MopFoxy Mop Posts: 2,823
    Reading, PA is now having a fundraiser!
    http://bit.ly/paebvd
    ☆ Wishlist Foundation ☆

    This is my kind of love...
    ♥♥♥
  • IzzymoonIzzymoon Posts: 65
    I haven't received any donations from any Pearl Jam fans at all. I take that back, I have a lovely lady in Brazil that has sent me a T-shirt because she wanted to help. If you can find it in your heart to give, either by volunteering the day of the event, or helping in any small way, or by donating an Item to help raise money, it would be most appreciated. Certainly, I would be more than willing to give you credit for your donation.
    Thanks for reading, listening, and caring. It's what makes the world go around <3
    #CauseTheWave #HealEB Worcester Fundraiser
  • IzzymoonIzzymoon Posts: 65
    edited January 2015
    RAFFLE ITEMS so far in Worcester Fundraiser @ The Citizen 120 Commercial St.

    magicwings.com/
    Raffle Item-Passes to the Buterfly Conservancy

    Raffle Item: Sam Adams Brewery is donating possible case, and merch. ( I wont know till I pick it up)
    Thanks-
    Barb
  • mondoretromondoretro Reading, PA Posts: 12
    Hey party people! If you are anywhere near West Reading, PA, please come on out to our event! We have awesome merch for auction and raffle, live music, great beers on tap, awesome food...This Sunday, Feb. 15 from 2-6 at the West Reading Tavern. Check out the event page to see what we've got...lots of mint PJ vinyl, posters, vintage PJ shirts, and tons more. #Causethewave #healEB
    image
    https://www.facebook.com/events/767746103308708/
    ~*electricity comes from other planets*~
  • PapPap Serres, Greece Posts: 29,173
    https://www.youtube.com/watch?v=W80xictJA3M
    Athens 2006 / Milton Keynes 2014 / London 1&2 2022 / Seattle 1&2 2024 / Dublin 2024 / Manchester 2024
  • PapPap Serres, Greece Posts: 29,173
    https://www.youtube.com/watch?v=OqXl-6pcW5I
    Athens 2006 / Milton Keynes 2014 / London 1&2 2022 / Seattle 1&2 2024 / Dublin 2024 / Manchester 2024
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