BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
My mom has lived her entire life with the debilitating genetic skin condition Epidermolysis Bullosa. She can’t walk or stand for very long before getting blisters on the bottom of her feet. It takes her hours each morning to clean and bandage her body before getting ready for the day. Her skin blisters at the slightest touch. She lives every day in pain. EB has a constant and lasting effect on every moment of her life.
And, really, that is nothing compared to the non-medical impact the disease has had on her life. The stories of the ceaseless teasing she endured in school, of her getting kicked out of swimming pools at hotels as a child on family vacations because the staff and other guests just didn’t care to understand, and especially about parents of my own elementary school classmates being concerned about her helping with school projects still break my heart and infuriate me.
My mom is the bravest person I know…but she considers herself “one of the lucky one”. When I started to meet others, children, with the same condition I began to understand why she feels this way. She survived. She lives a normal life. Most are not as lucky. Many are wheel chair bound. Many must have regular surgeries to separate fingers when blisters have fused them together. Many don’t survive because blistering in the esophagus prevents the ability to simply eat and breathe.
My mom is lucky. My mom is an inspiration.
I am running the 2017 New York Marathon to raise money and awareness to help find a cure for EB!!! Please, please, consider giving whatever you can to help us continue the tremendous strides being made to cure the worst disease you never heard of.
For more information continue below for a note from the EB Research Partnership -
We are working to treat and cure EB as quickly and efficiently as possible. We fulfill our mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities.
We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a group of devastating and life-threatening genetic skin disorders that affect children from birth.
Leading researchers say treatments and a cure for EB are within reach—for Shane, Ryan, Jackson, Michael, Jennifer and every other person suffering from this horrific condition. Though we have made significant progress, we need much greater resources in our pursuit of a cure.
Partner with us in our mission to further life-saving research.