Time to Fly 2012

Many of you probably follow Courtney Roth's blog regarding her son Tripp's fight with EB...the worst disease you've never heard of. Tripp sadly lost his battle with EB, but that doesn't mean the fight is over. Far from it!

PUCK stands for Pioneering Unique Cures for Children and is an initiative of the Cancer Research Fund. The Epidermolysis Bullosa Medical Research Foundation and the Jackson Gabrial Silver Foundation have announced a matching grant for the research team at the University of Minnesota.

Debra, an organization dedicated to helping those with EB, describes EB as Epidermolysis Bullosa (EB) is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death.There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.

The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen. Caregivers, often parents or family members of EB children, must work in tandem with medical professionals to determine and administer different treatment methods to care for EB wounds.

Christie Zink is an advocate for EB and is fundraising to raise money for the Children's Cancer Research Fund. 100% of the money raised goes to EB research and 100% of the money will be matched. You can visit Christie's fundraising page at Time to Fly 2012.

As a parent I can't imagine watching my child live in excruciating pain, to know that my basic care (bathing, changing a diaper, feeding) is causing pain. A bath, instead of being a time for fun and play, becomes a time of anxiety and agony. Every diaper change is sheer torture. It's heartbreaking. No parent wants to see their child suffer. No child should have to suffer.

A cure is possible. It's within reach. Won't you help us get there?