Rachael Foster-Yellen via Crowdrise
May 01, 2015
BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Nov 01, 2015
Dear Friends and Family,
On November 1st, I will be running the 2015 TCS New York City 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 kids you will ever meet. His smile is contagious and I am in awe of his courage and strength everyday. Just Click on the video and see for yourself .
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.
What is EB?
Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available. -
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 the past 4 years, EBRP has raised over $4 million for disease research and is helping to fund the promising work taking place at leading institutions such as Stanford, the University of Minnesota and the University of Colorado. Visit www.ebresearch.org to learn more about this organization.
I am honored to be a part of Team EBRP in the 2015 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. You can support me and Team EBRP by going
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!
See more at: https://youtu.be/p2LHqHzBepQ