BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Nov 01, 2015
Dear Family and friends,
On November 1, 2015, I will be running the NYC Marathon in honor of my son Robert John Twible. I will be running with team EBRP in hopes to finding a cure for this horrible disease. Since last year, Robbie has had three surgeries in order to open his esophagus and clear the blistering. Walking has become a major chore for him. The everyday things that we take for granted are a major challenge for him. EB is taking its toll on his body and fighting back is so difficult.
In spite of all the pain that he endures, Robert continues to fight for a normal life. He wants to be like every other 13 year old boy but unfortunatley that is so far from the truth. He is a 13 year old boy who spends almost 3 hours of his day being bathed and bandaged. He takes pain medication just to get through a bath. He often needs to be carried to his bed because taking another step would be too much. EB has taken so much of his body, but will never take his spirit and his smile.
It is that spirit and smile that will get me through 26.2 miles...I will run for my son in hopes that he one day will be able to run with me. My last marathon will be his first.
Please join me in my efforts to find a cure for EB. Help Robbie and all of his friends live a life that is free of pain, free of blisters and bandage changes. These children dream of the day that they can say "I once had EB" Let's make that dream their reality.
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 Robbie, John Hudsson, 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.