Dear Friends, I am writing to share some wonderful news. My son Devin is walking, running, and can even ride a bike all by himself. That may not seem all that amazing on its own, but Devin’s circumstances are quite unique. Devin lives with Duchenne Muscular Dystrophy (DMD), a terminal muscle disease. It’s a disease Read more about Thank You For Your Support[…]
I don’t always do a great job at recognizing all the amazing things that happen in life, especially day-to-day as they occur. Today however, something happened that left me in complete shock. Devin and I were at the University of Florida for the Imaging DMD study. Devin was in a room going through a series Read more about A Chance Meeting Left Me in Shock[…]
if I CAN if it’s unacceptable, I can confront it. if it’s unbearable, I can endure it. if it’s unbeatable, I can defeat it. if it’s never been done, I can be the one. Christ strengthens me. I wrote this in the hospital today. I was thinking about everything we’ve been through with DMD, Read more about If I Can[…]
“The Day” On September 19, 2016, the US Food and Drug Administration (FDA) approved the first ever treatment for Duchenne Muscular Dystrophy. Eteplirsen, otherwise known by its brand name Exondys51, was developed by Sarepta Therapeutics. Exondys51 is a novel medicine that uses a technique called exon skipping which allows an error in mutated RNA to Read more about Bring Me to the Payers – The Fight for Access to Exondys51[…]