FSHD patients are needed for a research study for: The Relationship of Electrical Impedance Myography to Muscle Structure and Function in Facioscapulohumeral Muscular Dystrophy (FSHD). The study is directed by Jeffrey Statland, MD, of the University of Kansas Medical School.
Recent genetic advances in the understanding of FSHD have identified potential future targets for therapy. Consequently, it is important that to have appropriate tools in place for use in FSHD clinical trials. This study will evaluate a new measure of muscle structure, electrical impedance myography (EIM).
The ability to measure underlying changes in your muscle and understand how those changes relate to your strength or the underlying pathology in FSHD will be of vital importance in designing future FSHD therapeutic clinical trials.
This study is seeking twenty (20) volunteers to participate in this study. Volunteers will be required to make a single visit lasting approximately 6 hours. Anyone with a diagnosis of FSHD who is able to walk independently and can travel to and from the University of Kansas Medical Center is eligible for this study.
For more information contact: Melissa Currence Neuromuscular Research Center University of Kansas Medical Center 3901 Rainbow Boulevard, Mailstop 2012 Kansas City, KS 66160 Phone: 913.588.0684 mcurrence@kumc.edu
Download for further details: Kansas_EIM MRI Study Fact Sheet.
Hi, I was diagnosed with FSHD In 2006 and I am getting ready to turn 49yrs old, I was the first to be diagnosed in my family through DNA. My mother and sister also tested positive in 2006. Just last year I found out that my 29yr old son and my 21yr old daughter also have it! My mother,sister, and I can all walk short distance and my children are still walking on their own, but suffer in other ways, thus the importance of finding a treatment or cure!
Please know that I had the pleasure of assisting Dr. Statland in Rochester, NY. I had measurements on this machine and it does not hurt. I did not feel a thing. Please help volunteer if you can and support Dr. Statland’s efforts!
Miranda Collin – Portageville, NY