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[…]

brewer mini marathon and 10k

My First MDA Team Momentum Race

I just completed my first official race for Team Momentum! I finished a 10k at the Brewers Mini!  We had a very busy day the day before the race. The day started early in Chicago. I went to Lurie Children’s Hospital for my weekly appointment. Then we drove to the Milwaukee area to the Children’s Read more about My First MDA Team Momentum Race[…]