DonateWith help from supporters like you, Debra of America continues to provide programs and services to people with Epidermolysis Bullosa and their families, and to support EB research.
|The mounting cost of bandages is most often not covered by an EB family's health insurance.||89.4¢ of every dollar donated goes directly to EB patients, families, and research.|
Have a Heart for EB - 2009
“Have a Heart for EB” was held over Valentine’s Day weekend, Feb. 12-15, 2009, in Orlando, Florida and was a great experience for everyone who attended. Through a generous grant from National Rehab, each “Have a Heart for EB” family received 3 “2-day” passes to Disney World. This year, Debra of America agreed to help organize the event, making it as fun and worry free as possible.
Debra worked with its friends in the EB community to make the weekend memorable for all the participants. Volunteers decorated the gathering room with Debra teddy bears and balloons. Hollister Wound care hosted an ice cream social and Leslie Rader, a new member of the Hollister team was in attendance. Madeline Weiner, RN was also able to join us, as a representative of RegeneRX , the sponsor of a Pizza party. Additionally, National Rehab distributed goodie bags and “Have a Heart for EB” t-shirts.
Many of the children had not seen each other since last June’s Patient Care Conference in Denver Colorado. They quickly reconnected, playing and having a great time. Little girls dressed in Disney gowns, tiaras and fairy veils and pranced amongst the guests while boys with swords and light sabers battled it out. They also had the opportunity to decorate cupcakes, made by Sara Denslaw. Slathered with icing and loaded with sprinkles, every cupcake was a work of edible art!
“Have a Heart for EB” created special memories for all in attendance. For the EB families, the trip allowed for family reunions, seeing far away friends, and even an adoption. Bruce Head and Cindy McCurdy used their trip to finalize the adoption of their son Armando. Cindy met Armando while working at Camp Discovery and quickly realized she wanted to have him become a part of her family. “Have a Heart for EB” was a tremendous success and loads of fun because of so many big hearted people in the EB community working together. Debra thanks everyone who pitched in and made this event a great success.