PARSIPPANY — A father who dedicated months to bicycling 8,000 miles across the country to raise awareness for the ultra-rare disease that took his infant son’s life will be welcomed home, Tuesday, October 30 with a special ceremony.
Robb Freed’s son Drake was born without skin on his fingers and was quickly diagnosed with an ultra-rare genetic disease known as epidermolysis bullosa (EB) for which there is no cure.
Tuesday’s homecoming event will begin at noon at Castle Creek Pharmaceuticals located at 6 Century Drive.
The company is currently working to develop what could be the very first safe and effective treatment for EB patients. National patient advocacy group DEBRA will also be there to show support.
This comes as the organization marks its annual National Epidermolysis Bullosa Awareness Week held between October 25 to October 31.
EB is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (200 children/ year). Symptoms include extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs can also be seriously affected. EB is often painful and is in some cases lethal before the age of 30. Daily wound care, pain management, and protective bandaging are the only options available for people with EB. You can find more information on the disease and on Robb’s journey by clicking here.
