BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT: 2016 Shamrock Shuffle 8K
EVENT DATE: Apr 03, 2016
EB Research Partnership wrote -
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.
Individuals with EB lack a critical protein that binds their layers of skin together. Without this protein, even the slightest touch or friction can cause blisters and wounds all over the body—inside and out.
By joining TEAM EBRP, know that you are making a difference in the lives of those affected by this disorder. Together, we can help bring life saving treatments to those who suffer daily from EB. We greatly appreciate your support. For more on EB and the strides we are taking for a cure please visit www.ebresearch.org
If you have any questions about the Shamrock Shuffle please contact Abbie Levine at email@example.com
Many people on our team are running in honor of Teodora (Teya) Radovic who was diagnosed at birth with Recessive Dystrophic EB. At just 4 months old, Teya had an experimental bone marrow transplant which helped her condition. However, it was not a cure. Now almost two years old, Teya is a loving, smart, and adventurous little girl. Despite battling EB every day, she is full of life and doesn't let this condition get in her way. We are participating this year in honor of this amazing little fighter and others like her!