Dear Friends and Family,
On March 17th, I will be running the 2019 United Airlines New York City Half Marathon to support the EB Research Partnership (EBRP), a nonprofit organization that is close to my heart. Someone I love very much, John Hudson Dilgen, is battling this disease. John is one of the most amazing soul you will ever meet. His smile is contagious and I am in awe of his courage and strength everyday. For John and all of the children fighting EB, even the slightest touch or friction can cause blisters and wounds all over the body--inside and out! The pain is something no one, especially children, should have to bare.
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. For a child with EB, even the slightest touch or friction can cause his blisters and wounds all over the body--inside and out. You can catch a glimpse into life with EB and the work that is being done to find a cure at https://www.youtube.com/watch?v=hXN4GpisLMU. And be sure to check out this great video about why people love to run with Team EBRP https://www.youtube.com/watch?v=qz0QeSCWif4
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.
There is tremendously encouraging work underway, and a cure for EB is within reach. The EB Research Partnership is aggressively funding research. In 2018, we raised $7 million to fund 20 concurrent EB programs, therapies or cures. Visit www.ebresearch.org to learn more about this organization.
I am honored to be a part of Team EBRP in the 2019 United Airlines NYC Half Marathon. Please consider making a donation to help me reach my fundraising goal of $1,500. Every dollar brings us a step closer to finding a cure for this horrible disease. You can support meby going to
or by sending a check made payable to the “EB Research Partnership” (be sure to include my name in the memo line) to: EB Research Partnership 132 East 43rd Street – Suite 432 New York, NY 10017
Thank you so much for supporting me and the work that the EBRP is doing to find a cure for EB.
With Love and gratitude,