Jogging for Jonah
Posted on 4/30/2012
Join the community at Tanglewood Park for the Jogging for Jonah 5K that is raising awareness and money for Dystrophic Epidermolysis Bullosa Research Association.
The event is taking place at Tanglewood’s Shelter 2 beginning at 8 am, with the 5K starting at 8:30 am and the Fun Run at 9 am.
Jonah Williams was born on February 27, 2009, and was immediately 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 bodily function.
All proceeds from Jogging for Jonah will go to the Dystrophic Epidermolysis Bullosa Research Association to help fund research for a cure, so that Jonah, and thousands of children like him, will someday know a life without blisters and constant pain.
Entry forms and registration fees must be submitted by May 1, 2012.
For more information and to register or donate, please visit http://debra.org/joggingforjonah