BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT: 2015 Shamrock Shuffle 8K
EVENT DATE: Mar 29, 2015
I never thought I would ever be a runner...I never thought that my heart would lead me in this direction...I am so incredibly blessed that it has...
I would like you to meet my sweet little friend Elisa. Elisa was born with a rare skin condition called Epidermolysis Bullosa (EB) Elisa's EB is severe and she has spent many days in a pain that most of us could never imagine. She spent her days wrapped head to toe in bandages to protect her from bumps that could potentially cause damage to her skin and to prevent infection that could be fatal.
Elisa faced many difficult challenges and obstacles and depite this, she fought, and she continues to fight with everything she has. She is a survior and each day she inspires us with her tenancity and courage...and that sweet little personality too!
This last year, Elisa underwent a potentially life saving bone marrow transplant at the University of Minnesota, and her life has changed dramatically, although she is not cured. She continues to fight each day determined to beat the odds and not allow EB to win. I believe she will...for there are amazing strides being made and there is tremendous hope in the research being done and she is a part the cure for EB.
(Please see article http://www.startribune.com/lifestyle/health/218242151.html?page=1&c=y )
These AMAZING breakthroughs are made possible because of dedicated people who are determined to find a cure and the people who help fund this vital research. You can be part of the cure by making a donation today and supporting Team EBRP at the Shamrock Shuffle!
Elisa...my sweet girl, this is all for you! Thank you for continuing to inspire me everyday!! I love you so very much and I promise you I will continue to fight for you and others with 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.
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.