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Thursday, March 7, 2019

Running For Epidermolysis Bullosa Research (New York City Half Marathon)


 EB Research Partnership
March 17, 2019 
Sunday
New York City Half Marathon
Please consider making a donation to help me reach my fundraising goal of $1500.00
 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.  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 LINK . And be sure to check out this great video about why people love to run with Team EBRP 
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 $1500.00.  Every dollar brings us a step closer to finding a cure for this horrible disease. You can support me and Team EBRP by going to LINK 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.
Best,EB Research Partnership wrote:

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. 
www.ebresearch.org


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