Rare Disease Report

Brad Pitt, Sting, Zach Galifianakis, and Others at Epidermolysis Bullosa Charity

JANUARY 16, 2017
Andrew Black
What do Brad Pitt and epidermolysis bullosa advocates have in common? They both rocked out at the Rock4EB annual charity event this week in Malibu, California to raise funds for rare disease research focused on epidermolysis bullosa.
Rock4EB is an annual charity event from the Epidermolysis Bullosa Medical Research Foundation (EBMRF) that is dedicated to raising money and awareness for the rare skin disorder, epidermolysis bullosa. 
The EMBRF was established in 1991 by Gary & Lynn Fechser Anderson who lost 2 children to EB. 
In 2005, well-known Hollywood agent Andrea Pett-Joseph founded the Los Angeles chapter because her son also suffers from EB.  To date, The Joseph Family has helped raise over $5 million for research and a large proportion of that money comes from the annual the Rock4EB event.
This year’s event was hosted by actor Zach Galifianakis, most known from the movie The Hangover. Musicians Sting and Chris Cornell headlined the event and put on an amazing performance for the crowd.
EBMRF honorary board member, Brad Pitt, introduced Chris Cornell to the crowd. And while most of the press focused on the fact that this was Brad Pitt’s first outing since his divorce from actress Angelina Jolie, we want to thank Brad and all the celebrities for taking the time to raise awareness of this painful, rare skin disorder.  
Some of the other attendants of the event that were listed were: Charlie Hunnam, Elizabeth Olsen, Kaley Cuoco, Garrett Hedlund, Rami Malek, Courteney Cox, Heidi Klum, Cindy Crawford and husband Rande Gerber, David Spade, Jay Ellis, Kevin Nealon, and many more.

About Epidermolysis Bullosa

Epidermolysis bullosa (aka 'the worst disease you've never heard of') is a group of devastating, life-threatening genetic skin disorders impacting children that is characterized by skin blisters and erosions all over the body. 
The most severe form, recessive dystrophic epidermolysis bullosa, is characterized by chronic skin blistering, open and painful wounds, joint contractures, esophageal strictures, pseudosyndactyly, corneal abrasions and a shortened life span. Patients with recessive dystrophic epidermolysis bullosa lack functional type VII collagen (C7) owing to mutations in the gene COL7A1 that encodes for C7 and is the main component of anchoring fibrils that attach the dermis to the epidermis.
Epidermolysis bullosa patients suffer through intense pain throughout their lives, with no effective treatments available to reduce the severity of their symptoms.

For more information, visit http://www.ebkids.org/
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