florida-imaging-dmd-study-MRI

Imaging DMD Study

University of Florida April 23-25, 2017 Devin enrolled in the Imaging DMD study which has been designed to compare the muscles of boys with duchenne to muscles of boys without DMD over a period of 5 years. They observe and document the amount of muscle damage shown in the images from the MRI along with data from Read more about Imaging DMD Study[…]

cure duchenne Celeste Graham and Devin argall

CureDuchenne Cares

Family Workshop Milwaukee, WI April 22, 2017 We were honored to be the host family for the CureDuchenne Cares family workshop held in Milwaukee, WI. Our family had a wonderful time and learned a lot of very valuable information. The CureDuchenne team is absolutely outstanding! Please attend a workshop if you have the opportunity. They need Read more about CureDuchenne Cares[…]

Imaging DMD study logo

A Chance Meeting Left Me in Shock

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[…]

Bring Me to the Payers – The Fight for Access to Exondys51

“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[…]