WEBNotes

National EB Awareness Week

We’re kicking of EB Week with a sneak peek at our new Holiday Collection line of AlexandAni bracelets, designed by supporters Kaley Cuoco, Elizabeth Olsen and Mandy Moore. Limited edition, coming soon!


STING & CHRIS CORNELL ROCK4EB 2017

2017 rocked in the New Year with soulful and powerful performances by international rock stars Sting and the late Chris Cornell. Hosted by comedian Zach Galifianakis, the event drew our biggest crowd yet and helped raised over $700,000 for EB Research. We are grateful to Alex & Ani for sponsoring the evening. Thanks to everyone who donated to our amazing silent auction and our incredible food vendors who donated food tastings from Coffee Bean, PokPok LA, Chipotle, Pink’s Hot Dogs, D’Amore’s Pizza, Sprinkles Cupcakes, Treats, Spartina, Little Beach House Malibu, King’s Seafood and Great Taste Catering, Redbull

We mourn the passing of our dear friend Chris Cornell. The world lost such a gifted and kind soul whose music and generous spirit will live on in our memories.


JOSH BROLIN GIVES BIG FOR EB

Thanks to actor Josh Brolin, The EBMRF was one of the beneficiaries of the Giving Back Fund’s  8th annual Big Game /Big Give Super Bowl Event . We are grateful to Josh and The Fund for recognizing our work and helping us raise funds and awareness for EB research.


Ed Sheeran
Rock4EB 2015

What an amazing night as Grammy Winner and international musical sensation Ed Sheeran brought everyone to their feet at our 3rd Annual Rock4EB! in Malibu.

Thanks to our supporters, over 600 guests were treated to delicious food tastings from Nobu, Pink’s Hot Dogs, Akasha/Sambar, Prova Pizza,Treats Frozen Yogurt, Georgetown Cupcake, Wally’s Vinoteca, Chipotle and tasty libations from Redbull,  Rums of Puerto Rico, and Coffee Bean & Tea Leaf, followed by an amazing performance by Ed. Special thanks to Cadillac for sponsoring the evening. Thanks to our generous donors, the evening raised over $600,00 which will help fund critical research.

MALIBU, CA - NOVEMBER 15: (L-R) Actress Courteney Cox, recording artist Ed Sheeran and producer Randy Jackson attend Rock4EB! 2015 with Ed Sheeran and David Spade on November 15, 2015 in Malibu, California. (Photo by Todd Williamson/Getty Images for EB Kids) *** Local Caption *** Ed Sheeran; Randy Jackson; Courteney Cox    MALIBU, CA - NOVEMBER 15: Brandon Joseph (L) and actress Kaley Cuoco attend Rock4EB! 2015 with Ed Sheeran and David Spade on November 15, 2015 in Malibu, California. (Photo by Todd Williamson/Getty Images for EB Kids) *** Local Caption *** Kaley Cuoco; Brandon JosephMALIBU, CA - NOVEMBER 15: Recording artist Ed Sheeran (C) and guests attend Rock4EB! 2015 with Ed Sheeran and David Spade on November 15, 2015 in Malibu, California. (Photo by Matt Winkelmeyer/Getty Images for EB Kids) *** Local Caption *** Ed Sheeran                Ed Performance 3          MALIBU, CA - NOVEMBER 15: (L-R) Actors Courteney Cox, David Spade and Isla Fisher attend Rock4EB! 2015 with Ed Sheeran and David Spade on November 15, 2015 in Malibu, California. (Photo by Todd Williamson/Getty Images for EB Kids) *** Local Caption *** Courteney Cox; David Spade; Isla Fisher


RYAN SEACREST

Kaley Cuoco joined Ryan Seacrest on KIIS FM to help promote The Rock4EB Crowdrise campaign with Ed Sheeran. Click here to listen:

http://www.kiisfm.com/onair/ryan-seacrest-52241/kaley-cuoco-talks-rock-for-eb-14082968

 


 

We are inspired by….

Jonathan Pitre is a young man who dreams big.Watch here to see how some of his dreams come true:

http://ottawacitizen.com/news/local-news/its-unreal-jonathan-pitre-cant-believe-the-public-response-to-his-story

ESPN Feature:  www.youtube.com/watch?v=iuYxGtuBSgk


 

Her name is Natasha Starkey, and she wanted to go to the prom. Watch here to see how her care team made it happen:

https://www.youtube.com/watch?v=qyHFideeZ1A


Ian Ziering On Celebrity Apprentice

Ian Ziering (90210, Sharknado) took home $320,000 as a finalist playing for The EBMRF on Celebrity Apprentice. Thanks Ian for your support and raising awareness for EB!


Jackson Browne
Rock4EB 2014

Jackson Browne brought down the house at our 2nd Annual Rock for EB event in Malibu with David Spade.

Jackson Browne & David Spade hosted our 2nd Annual Rock4EB fundraiser in Malibu and helped raise over $400,000 for research. Among the over 400 guests were Bill Maher, Adam Sandler, Courteney Cox, Orlando Bloom, Kaley Cuoco-Sweeting, Judd Apatow and others. Thanks to everyone who came out and supported and thanks as well to our sponsors SUJA Juice and Sabra.

Click here to see photos.


Eddie Vedder
Rock4EB 2013

It was a star studded evening for our 1st Rock4EB fundraiser, with special performances by Eddie Vedder and host Zach Galifianakis.

The EBMRF partnered with Heal EB and kicked off EB Awareness week 2013 with a private event in Malibu, hosted by comedian Zach Galifianakis & legendary Pearl Jam frontman, Eddie Vedder. Over 350 supporters enjoyed an afternoon of delicious food and wine, silent auction, followed by a magical evening of performances by Eddie, and surprise guests Natalie Maines, Jeanne Tripplehorn, Tim Robbins, Adam Sandler, Catherine Keener and more. We are truly grateful to Eddie, Zach and everyone who came out to raise awareness and funds for EB.

Click here to view Images


AMAZON SMILE

Every time you order from Amazon using our code, our Foundation will get a % of the sales, no order is too small-it all adds up! Click here to start shopping: SHOP AMAZON/EB!


Exciting Research News!

Through a Matching Grant with The JGSF and The University of Minnesota, The EBMRF has successfully funded a $900,000 campaign for the gene therapy work of Dr. Jakub Tolar, which will allow him to advance his cutting edge research for EB.

read more »


EBMRF awards $150,000 grant

Exciting News! The EBMRF has awarded a $150,000 grant to USC’s Dr. David T Woodley and Dr. Mei Chen for their ongoing research of protein replacement therapy

read more »


Oprah’s Big Give

The EBMRF’s GivEBig with Eva Longoria and other EB supporters was featured on Oprah and raised $1 million!

read more »


Great news from Congress!

National EB Awareness Week (the last week of October) was formalized in late 2006 through resolutions passed by Congress and the Senate. Special thanks to Rep. Tim Bishop, Rep. Peter King, Senators Schumer and Clinton for their support in pushing this important legislation through, as well as volunteers Dennise Joseph, Gena Grushovnik, Barbara Stowe, Shirley Jones, Robin Eckworth, Allyson Anderson, Madeline Weiner, Don Peshkur and all the families who made their voices heard!


Thanks to the Faro Foundation

The EBMRF is happy to announce that thanks to a generous grant from The Faro Foundation, we have fulfilled the wishes of several families with critical needs, such as a motorized cart, specialized bed, portable wheelchairs, and other basic necessities. We are happy to be able to offer this support to the EB community.


EB GOES TO WASHINGTON!

EB advocate Alex Silver testified in front of Congress to give a parent’s perspective on the painful daily life of a child with EB. He also addressed the need for new avenues of funding EB research and discussed ways to work together with the government and the FDA to streamline the approval process for viable treatments. You can view a video and article about EB and the hearing that appeared on abcnews.com. EBMRF Executive Vice President Andrea Joseph was also interviewed for the article. You can view the video at http://abcnews.go.com/Politics/video/skin-blisters-kill-11226257 and the story here.

In addition, you can view Alex’s complete oral testimony at http://help.senate.gov/hearings/hearing/?id=d132692d-5056-9502-5da9-23c77808a20f (skip to minute 103)