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The Foo Fighters, Metallica, members of Soundgarden, Audioslave, Temple of The Dog, Miley Cyrus, Adam Levine and others took the stage to commemorate Chris Cornell’s life and legacy. The evening raised over $600,000 for The EBMRF. Visit our events page to see more.

EBMRF Joins forces with EBRP and SRF

In a joint collaboration with the EB Research Partnership and the Sohana Research Fund we have awarded $900,000 of venture philanthropy funding to support the important gene editing work of Dr. Jakub Tolar, MD, PhD, at the University of Minnesota.
As Dr. Tolar explains, “Next generation genome editing works like “gene surgery” to remove the malfunctioning DNA and replace/repair it. Scientists across the world are all working to bring this therapy from the laboratory to the patients.

We are proud to support his groundbreaking work on behalf of The EB community.

Chris Cornell and Sting


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.


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.

Rock4EB! 2015 with Ed Sheeran and David Spade

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


We are inspired by….

Jonathan Pitre was a young man who dreamed big. He was an inspiration to all those who knew him and his  kind spirit will be missed. Watch here to see how some of his dreams came true:

ESPN Feature:


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

Ian Ziering On Worst Cooks In America, Celebrity Edition

Ian Ziering (90210, Sharknado) took home $2500 as a finalist playing for The EBMRF on the Food Network’s  deliciously hilarious show,Worst Cooks In America, Celebrity Edition. Thanks Ian for your continued 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


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 »

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.