Posted on February 19 2016
Charlie Knuth often asks…”When my EB is gone, can I have a kitty?” He knows that one day in his lifetime EB will be cured. He will no longer require bandages, daily medications for pain, a feeding tube, an Aide at school to keep him safe, or the time consuming and painful task of wound care. Even though Charlie has undergone TWO lifesaving Stem Cell Transplants at the U of MN, and his quality of life has been drastically improved, he still suffers tremendously. Charlie knows 4 years ago, his dysfunctional mutation which created this mess called Epidermolysis Bullosa was corrected in the lab at U of MN. Under the direction of Dr. Jakub Tolar, scientists were able to “cut out” the incorrect gene and replace it with the correct one. Those very cells now produce Collagen VII, the anchoring fibril protein which holds skin together, or the “glue” Charlie was born without. How do you explain to a child he cannot have his corrected cells back because it takes a whole ton of money to convince the FDA? Charlie is not interested in regulations, protocols, procedures, or the red tape which holds his “cure” hostage. Hope alone will not take away Charlie’s pain. We believe that Dr. Jakub Tolar holds the “key to a cure”. Please help lessen the time it takes to make this a reality. For Charlie…for all people who suffer from Epidermolysis Bullosa.
Order a BRAVELET in honor of Charlie and make a donation the Dr. Jakub Tolar's groundbreaking research: https://www.bravelets.com/bravepage/irefuseEB