Help Me Raise Money for Debra and EB!
Thank you for supporting me in my efforts to raise money and awareness for the EB community, and debra of America. Please click the button on the right of the page to complete your donation. Every little bit helps us get closer to a cure for The Worst Disease You've Never Heard Of. Did you know that of those born with EB in 2014, 22% are no longer with us? That's why we count on the support of people just like you: Because the cost of doing nothing is too great. You can learn more about Epidermolysis Bullosa (EB) at www.debra.org.
I am running for Team Debra to honor the memory of Quinn Rosalie Seymour, who was born in August 2011 with Junctional Epidermolysis Bullosa-Herlitz. The only known treatment option toward a cure is a risky Bone Marrow Transplant, which Quinn received in December 2011. At the time, she was the 19th, and youngest, participant in a clinical trial at the University of Minnesota. Quinn endured grueling bathing and bandage changes that lasted 2 ½ to 5 hours, and was covered in bandages from her head to her toes. After enduring 3 bouts of pneumonia – with little to no immune system – Quinn succumbed to this horrible disease…just shy of turning 8 months old. You can read more about Quinn and her family, Quinn’s Butterfly Army, as well as their quest to raise funds that they were able to use to open and dedicate The Quinn Seymour Chapel in March 2016, at the University of Minnesota, where Quinn spent the majority of her life at www.quinnscrusade.org, or on Facebook search for @QuinnsCrusade.
I had the privilege of working with Quinn's family (dad, grandparents, aunt and uncle) for many years, and having watched her smile through this horrible disease? I can withstand the pain and be able to survive running 13.1 miles...especially if it can help raise money for a cure so no other child has to endure the pain that Quinny went through.
Thank you so much for your generous donation! Your donation will go to help those affected by EB:
-$25 will send a week’s worth of necessary wound care supplies to an EB Family
-$50 sends a care package to a child who has just been diagnosed with EB
-$100 allows Debra's EB Nurse Educator to help a family in need
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