Danielle and Jared Friedel of Weedsport have been so open when it comes to sharing their son's painful genetic disorder, and now they are being recognized by a national organization dedicated it. The Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) will honor the Friedel family with its 2014 EB Awareness Award. The organization will honor the Friedel's Wednesday, October 22 at an event at the B.B. King Blues Club & Grill in New York City. Last year the event raised tens of thousands of dollars to support EB research. DEBRA is the only national nonprofit dedicated to funding research for treatments and a cure. It also provides supportive services and programs for those who suffer from the rare disorder.
Announcing the award, DEBRA says, "Jared and Danielle have dedicated countless hours to educating people about their son's rare disease." The October fundraiswer will also honor a 12 year-old boy with EB. Robbie Twible will be awarded DEBRA's 2014 "Spirit Award."
Easton Friedel turns 2 years old in August. His progress recently has been remarkable. He is crawling, and his physical therapist says walking could be 6 months away. Click here for our most recent update on Easton.