BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Nov 01, 2015
Hello to all,
On November 1, 2015 I will be joining thousands of runners at the start of the NYC Marathon. As challenging as a marathon is, it is nothing compared to the challenges that children face as they live with a medical diagnosis of EB. EB is a very rare skin condition affecting children that requires daily pain management, daily baths, and dressing changes to help keep their skin free of infection and blisters. One with EB has extremely fragile skin whereby just a small amount of skin friction can cause an open sore or blister to form.
As a young girl living on Staten Island I was diagnosed with a chronic skin condition that made me a very self conscious individual. I thought it was the worst thing in the world, until as a new nurse I was randomly assigned to work on the dermatology unit at NYU Medical Center. I quickly learned that I was very lucky compared to those suffering with EB. I had no idea that skin conditions could be so severe. My heart ached as I helped many patients endure painful baths and dressing changes, while at the same time I was in awe of the strength and courage of these individuals.
I am looking forward to the challenge of running the marathon, but I am so excited to be working with such a great group of people to raise money for such a needed cause. EB is working towards a cure, but we need your help. Any amount will bring them closer to a cure! Thanks for your support. I will be thinking of each of you along this upcoming journey and on race day itself! Thank you!!
EB Research Partnership wrote -
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.