Please join us on Sunday, June 9 at Lake Forest Academy in Lake Forest, IL for the 5th Annual dash4debra to support those afflicted with EB. The money raised for this event will go to support research, provide medical supplies to families and patient access to specialists. Many patients with EB travel out of state for care and support, and many insurances do not cover the supplies needed for these patients' care. debra of America is the only national nonprofit organization dedicated to funding research and providing supportive services and programs for those with EB. Last year, dash4debra raised over $25,000 to help cure EB - thank you!
What is EB?
Epidermolysis Bullosa, 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.
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 EB, 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.