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Debra of America
Main aim of the charity
“Because the cost of doing nothing is too great” is an axiom that defines our mission and directs all of debra of America’s actions as an organization. debra of America's mission is to improve the quality of life for all people living with EB.
To achieve this, we do two things in parallel: we provide free programs and services to the EB Community in the United States and fund the most innovative research directed at symptom relief and a systemic cure.
-Debra’s Mission Statement
How the employee got involved and why
My son, Boone Studer, was born with Recessive Dystrophic Epidermolysis Bullosa. This condition has no treatments or a cure. This rare disease is caused by a genetic mutation causing Boone to produce little or no Collagen 7, a protein that helps bind our skin together. As a result of this, Boone’s skin is extremely fragile. So fragile, they are often referred to as ‘Butterfly Babies’ because their skin is as delicate as a butterfly’s wings. His skin easily blisters and sheers off, causing painful wounds all over his body. Not only does it affect the outside of his body, it causes blisters in his mouth, down his throat and all of his internal organs. This terrible condition is curable, but because it is so rare, does not garner the attention/funding needed for research to find a cure, or even a treatment option. We are desperately trying to raise money and awareness so my son can live a normal, long, pain free life along with all the other kids and adults living with EB every day before time runs out for them. If we find a cure for EB, we can also cure thousands of other rare diseases.
What work does the employee do for charity
For the last 2 years, my family and our friends have organized a fundraiser in October called ‘Boone’s Butterfly Buddies Walk For a Cure’ to raise money and awareness for Epidermolysis Bullosa (EB) and we donate all of the proceeds to Debra of America and the EB Research Partnership, 2 non-profits that help fund research to find treatment options and hopefully one day, a cure for this condition.