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.|
Jogging for Jonah
Helping Find a Cure for EB in Honor of Jonah Williams
Saturday, May 12, 2012
5K Walk/Run – 8:30 am
1 Mile Fun Run – 8:45 am
The registration deadline is May 1st, 2012
Jonah Williams was born on February 27, 2009. Upon birth, it was immediately noticeable that something was terribly wrong. Jonah was missing the skin from his elbows down and from his knees down. His hands and feet were completely raw, and lesions dotted the rest of his small body. He was diagnosed with Epidermolysis Bullosa, a devastating skin disorder that is often fatal.
Children who are affected with EB lack a protein that holds their skin to their body. The skin blisters or sheers off with the slightest friction or least amount of trauma - elastic and tags, seams, scratching an itch, rubbing your eyes, wearing shoes etc, all can cause debilitating blisters and scarring. Not only does EB affect the skin, it can affect internal organs, one's ability to absorb and maintain good nutrition, growth, and almost every other thing you can think of.
Jonah, along with the majority of EB kids, wears bandages on his entire body except his hands and face. Many kids with this disorder die from infection or malnutrition early in childhood or develop fatal skin cancer in their teens or early twenties. Some of them pass away from internal complications, such as the closing off of the airway from scarring. It truly is the "worst disease you've never heard of."
We are running this 5K to raise money for the Dystrophic Epidermolysis Bullosa Research Association, to help fund research for a cure, so that Jonah, and thousands of kids like him, will someday know a life without blisters and constant pain.
Entry forms and registration fees must be submitted by May 1st, 2012.
Your Logo on T-shirt
Event material as well as
The deadline for turning in sponsorship donations and submitting logo for t-shirt & sign placement is: April 27, 2012
For any additional information or to learn more about sponsorship opportunities contact Matt Williams at joggingforjonah [at] gmail [dot] com.