BENEFITING: Childrens Cancer Research Fund
As many of you know Epidermolysis Bullosa is something I have become somewhat passionate about. Not only do I try to be a proactive advocate, I am also very committed to raising awareness and helping any efforts to find a cure. This summer I have an opportunity to be a part of an event that will allow me to raise money for the research team in Minnesota.
PUCK (a parent driven initiative of Children's Caner Research Fund) was started and is run by parents whose daughters both suffered from Epidermolysis Bullosa, a devastating genetic skin disorder. Sarah died shortly before receiving her bone marrow transplant.http://www.childrenscancer.org/puck/sarah.html Bella, did undergo the BMT. Unfortunately, just about every complication that could have occurred in a bone marrow transplant occurred. Bella spent 99 days in the Pediatric Intensive Care Unit, and on day +101 of her transplant, Bella's heart finally gave out from multiple organ failure. The cause? The chemotherapy used to clear out her marrow. Ironically, the transplant worked. Bella started to grow her sister's skin not only on her body, but inside as well. http://www.childrenscancer.org/puck/bella.html
I will be walking in Tripp and Bella's honor as well as Little Miss Quinn who is currently undergoing the BMT at Amplatz Children's Hospital in Minneapolis. I hope that you will help me raise money for Pioneering Unique Cures for Kids (PUCK) and the research team at the University of Minnesota as I participate in this year's Time to Fly event on Harriet Island in St. Paul. Your donation can make a tremendous impact in to those who suffer the devastating reality of EB.