BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT: 2015 Shamrock Shuffle 8K
EVENT DATE: Mar 29, 2015
Hi my name is Rachael and I will be running this race for my 25th birthday, which is in March. People think turning 25 years old is just another number or that they're a quarter of a century old, but for someone who wasn't supposed to make it to their first birthday because I have Epidermolysis Bullosa it's a pretty big deal. I was diagnosed with recessive dystrophic EB at birth since I was missing the top layer of skin on both of my legs. My mom was able to take me home after 6 weeks in the PICU fully bandaged head to toe. It would take her 3 hours everyday to do a bath and bandage change.
I'm happy to say that I have improved over time but everyday is still a challenge of battling chronic pain and being able to maintain a "normal" life. Running is a major challenge for me because I risk cause blisters or skin tears on my feet, but I believe this risk is worth the reward. I'm running in honor of all the adults and children struggling to survive with EB and I would appreciate any support and encouragement to make it to the finish line. All donations are going to EB Research Partnership who is working really hard to find better treatments and hopefully one day a cure for EB!
The EB Research Partnership (“EBRP”) is the largest nonprofit dedicated to funding research aimed at treating and curing Epidermolysis Bullosa (“EB”), a devastating and life-threatening genetic skin disorder that affects children from birth.