The Carousel of Possible Dreams August 12, 2017 Devin and I had the great privilege of attending The Carousel of Possible Dreams as guests of CureDuchenne. CureDuchenne was one of the four charities to benefit from this year’s Chicago area event. It’s organized by the Festival of Children Foundation and held at the beautiful Sanfilippo Estate Read more about The Carousel of Possible Dreams[…]
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[…]
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[…]
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[…]
This is a selection of some of the videos we’ve made or have been included in.
We put together a video to share the 26 most impactful moments in our life, related to muscular dystrophy, over the past year. This is something we plan to do every year about a week before the Chicago Marathon. We hope you enjoy the video. It’s been a wild ride!