BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Nov 06, 2016
On November 6th, I will be running my first ever full marathon to support the EB Research Partnership (EBRP), a nonprofit organization that is close to my heart. EBRP funds scientific research with the goal of treating and curing Epidermolysis Bullosa ("EB"). EB is a devastating and life-threatening skin disease that affects children from birth.
You might recognize Robbie Twibble, either from our respective family FB pages or from his appearance on Ellen Degeneres. Robbie and his family passionately advocate for a cure for this grueling disease. For a child with EB, even the slightest touch or friction can cause his blisters and wounds all over the body--inside and out. While many of us cannot begin to fathom the physical and mental courage it must take to endure such trauma, this is what Robbie lives through each and every day. Robbie is a true inspiration- he is one of the happiest people I know despite having to face pain every day. As Ellen put it, Robbie is a true hero and we could all learn a thing or two from him. I kindly ask you to do two things: share Robbie’s story in the hope of raising awareness and consider donating what you can towards my personal goal of helping those living with EB.
Curing a rare disease is always a race against the clock. But curing EB is a race against a clock moving at warp speed. Children with severe forms of EB have a 60% risk of dying by age 15, and nearly a 100% chance of developing an aggressive, painful and fatal form of skin cancer over the course of his or her shortened life.
I am honored to be a part of Team EBRP in the 2016 TCS New York City Marathon. Please consider making a donation to help me reach my fundraising goal of $2,500. Every dollar brings us a step closer to finding a cure for this horrible disease.