April 30, 2017

Imaging DMD Studys

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 functional assessments. The idea is that MRI can replace other tests that have been used to detect and monitor disease progression. It’s thought that MRI will be more reliable than the common functional assessments such as the 6 minute walk test and North Star Ambulatory Assessment (NSAA). The study is a collaborative effort between researchers at the University of Florida, The Children’s Hospital of Philadelphia, Oregon Health and Science University, and Shriners Hospital for Children-Portland. Dr. Krista Vandenborne and Dr. Lee Sweeney, both of University of Florida are the co-directors of the study. We were blessed to work with Donovan Lott PhD and a number of research assistants who made every minute of our time there very entertaining. Anyone who knows me (Josh), knows I’m very involved in every aspect of managing Devin’s care. I’ve developed a good understanding of the science related to DMD through thousands of hours of in-depth research and years of real life experience. I LOVE the opportunity to discuss the topic of duchenne with experts in the field. Donovan is absolutely one of them. He was so generous with his time and eager to engage me in discussion. I learned a lot from him, but the thing I learned that stood out most, was that he’s sincerely interested in the well-being of everyone affected by duchenne and he’s fully committed to the research work involved in the Imaging DMD study. Thank you Donovan and thank you to everyone else involved in the study at the University of Florida.

 

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