Jonah suffers from a horrible genetic skin disorder Epidermolysis Bullosa, a disease that makes his skin blister or sheer off with the slightest friction. He can get blisters or wounds from simple things, such as tags and seams from clothes, rubbing his eyes, a simple toddler fall, bumping his chin on the table, pulling his shirt over his head, anything that causes friction. He wears full body bandages everywhere but his face and hands, both of which are covered in wounds.
EB not only affects the skin but internal organs as well. Many children who suffer from EB die in infancy due to infection, malnutrition (their bodies burn all their calories attempting to heal the skin), or internal involvement (closing off of the trachea or intestinal issues due to scarring). Many who make it to their teens or twenties die of skin cancer. Those affected by EB live knowing nothing other than pain that they’ve experienced since birth.
There is currently no cure.
Register by March 20th for a guaranteed tshirt!
Thanks for another great year! We had a blast at the 5th Annual Jogging for Jonah and can’t wait to see you again next year! Share your pictures on our Facebook page! #joggingforjonah
12:45 – 1:45pm on Saturday, April 1st
*please note that there is no Friday night
packet pick-up this yearEvent Day Schedule of Events
Day-of registration & packet pick up opens at 12:45
Run will be held from 2:00-3:00
Extra shirts will be for sale at 2:00
Awards, raffle drawing, and ceremony will be held immediately following the run
Note on shirts: Anyone who registered online before the March 20th deadline are guaranteed a shirt and will be given their ordered size upon packet pick-up on Saturday. Anyone who registered after that deadline, online, or on the day of the event will receive a shirt on a first come, first serve basis on Saturday afternoon
Introducing “Laps for a Cure”! This year we will be combining our 5K and Fun Run into one fun-filled running (and walking!) event: Laps for a Cure!
How does it work?
“Laps for a Cure” allows participants to choose however many laps they’d like to run/walk and raise money per lap completed. Each lap is about 1/4 of a mile. Complete four laps as an equivalency to the Fun Run, 12 laps for a 5K, 24 laps for a 10K, or as many as you can or want to run/walk in a one hour timeframe! Set a goal ahead of time and recruit donors to sponsor you per lap on your personal fundraising page!
You can follow Jonah’s story on his Mom’s blog – click here.