Season of Giving: debra of America
12/15/2017 — Leah Hyland
In the spirit of the season, PartnerShip is donating to five charitable organizations that speak to our hearts and lift up our community. This tradition started several years ago and it’s our way of giving back and saying thank you to those who inspire us. The hardworking elves in the PartnerShip holiday planning committee have made their selections and we couldn’t be more excited to share them with you! We hope that by hearing their stories you’ll be as inspired as we were to hear about what they do.
First up is debra of America. This organization is dedicated to finding a cure for Epidermolysis Bullosa (EB), which affects 1 out of every 20,000 live births in the United States. EB is a rare genetic connective tissue disorder that 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.
There’s a reason it’s often referred to as the “worst disease you’ve never heard of.” Children living with EB are affectionately referred to as “Butterfly Children” because their skin is as fragile as a butterfly’s wing. They live with painful blisters that cause them to endure constant pain and suffering.
debra of America is committed to funding research toward a cure, while also providing direct services and support to patients and their families. debra of America works to improve the quality of life for people with EB, their families, and caregivers. They have several different programs that include services like educating nurses, distributing wound care supplies, and providing care packages to families with newborns with EB.
Next week, we'll feature the remaining four organizations, so make sure to check back!