Please join us for Painting with a Purpose at La Fava Restaurant and Bar at 1:00 p.m. on Sunday, October 27, 2019.  The event includes a painting class, an open buffet, bar,
and a raffle with fun prizes to win.   

This event supports debra of America and those with Epidermolysis Bullosa (EB)

Painting for a Purpose is in memory of Josiah Robinson. Josiah was born on October 5, 2018 with Junctional Epidermolysis bullosa Herlitz. Josiah was such a sweet loving little boy who despite his pain and suffering from JEB-H he still managed to be such an inspiration and strong little EB warrior. His big brown eyes could tell a story like a portal to his soul. Josiah touched the lives of everyone who knew him, near and far. He was so loved and will be forever missed. 

What is EB?

Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare connective tissue disorder with many genetic and symptomatic variations.  All types of EB share the major symptom of extremely fragile skin that blisters and tears from the slightest friction or trauma.  Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30.  There is currently no cure or treatment for EB. Pain management, wound care, and preventative bandaging are the only options available.  Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly.

There are about 25,000 people living with EB in the US.  It occurs in every racial and ethnic group and affects both genders equally. For a more in-depth and comprehensive understanding of Epidermolysis Bullosa, please also check out debra of America’s explanation by clicking here.

What is debra of America? 

Because the cost of doing nothing is too great. This axiom defines debra of America's mission and directs all that we do. We are dedicated to improving the quality of life for those living with EB. To achieve our mission, we do two things in parallel: we provide free programs and services to the EB Community in the US, and fund the most innovative research directed at symptom relief and a systemic cure. 

In 2017 alone, our largest program, the Wound Care Distribution Program, sent over $1 Million worth of specialized bandages. That translates to over 108,000 pieces of wound care sent to families across the US. Our research funding identified the genetic basis of EB and supports the science, which is at the forefront of gene and stem cell therapy, RNA repair, protein replacement, and inhibition of squamous cell carcinoma.