Dystrophic Epidermolysis Bullosa Research Association of America, Inc. wrote -
TEAM DEBRA has a limited number of charity entries in the 2016 NYC Half Marathon on Sunday, March 20, 2016 - and we want you to join our team! The NYC Half Marathon will take runners from around the globe on a 13.1-mile tour of New York City.
For questions or to join TEAM DEBRA, email email@example.com or call 212-868-1573 x105.
100% of donations benefit debra of America, the only U.S. nonprofit providing all-inclusive support to the EB community, through funding research for a cure, and providing free programs and services for those with Epidermolysis Bullosa (EB).
FACTS ABOUT EB
➤ 200. The number of children born with EB very year in the US, which equates to 1 in 20,000 births. Both genders and all racial and ethnic backgrounds are affected.
➤ $418,727. The total value of the boxes of supplies that debra of America shipped to EB families in 2014.
➤ 6. The number of surgeries a child with EB may need every year in order to swallow liquids.
➤ 22%. The percentage of the children born with EB in the United States in 2014, who passed away.
➤ $10,000. The average monthly cost for EB patients to acquire vital specialized bandages. Many insurance companies do not cover the full cost of these bandages.
WHAT IS EB?
Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder in which children do not produce a vital protein to allow their skin to adhere to itself. 1 out of every 20,000 births in the United States are affected by the disease. Children with EB are often referred to as "Butterfly Children" because their skin is extremely fragile and can blister or tear from any friction. Internal organs can also be seriously affected by the disease. EB is painful, often debilitating, and is in some cases lethal. There is no treatment or cure. Daily wound care, pain management, and protective bandaging are the only options available. Learn more at: debra.org/whatiseb