12-year-old Daisy lives with Junctional Epidermolysis Bullosa (EB). She is one of many who inspire debra of America’s work. Daisy is a huge music lover; her favorite bands are Led Zeppelin and the Stray Cats!
8-year-old Rafi starred in our 2016 #ItWontHurtToWatch Video campaign. The campaign, produced by our friends at HAVAS Tonic, shed some light on the daily battles that those with EB face.
3-year-old Asa starred in our 2016 #ItWontHurtToWatch Video campaign. Asa sadly passed away in 2019. His sweet spirit will never be forgotten, and he will always be a part of the debra of America family.
#ItWontHurtToWatch: Mom’s Story
This video is from the powerful perspective of a parent of a child who lives with this painful, rare disease. Jackie, who stars in the video alongside Rafi, provides some insight on the impact that EB has on the family's life.
In 2017, the Washington Post featured 10-year-old Ella in an article that chronicled some of the challenges of living with EB. In the article, it’s said due to her EB, she’ll never play tag on the playground. Inspired by Ella, we launched the #TagWithElla social media campaign to create a virtual game of tag that Ella could participate in!
2014 debra Care Conference Video
The debra Care Conference (DCC), formerly known as the Patient Care Conference, is a multi-day biennial conference designed specifically for EB families and the professional community to access the best information, discover new ideas, and connect with other EB families all over the country. The 2014 DCC was held at the Gaylord Opryland Resort in Nashville, TN.