Participant 3

Why did you enroll? I chose to take part in Dr. Zimmerberg’s research for the “greater good” and an unanticipated benefit is I’m learning an amazing amount of detail about my overall health, LGMD, and how the disease is affecting me. 


What did the study involve? As a patient in Dr. Zimmerberg’s LGMD2B/Miyoshi study you will be cared for by health professionals at the very top of their game. Dr. Zimmerberg and his team are not just kind, respectful and appreciative… they are flat out brilliant.  And the food? Meals are surprisingly good, you can order off a menu, and they are delivered like hotel room service. 


How would you characterize your experience in the study? In two weeks I’ll be once again flying from my home in Alaska to NIH headquarters in Washington, D.C. for five days of intensive tests. I know I won’t be cured and most likely won’t see any improvement in my own condition; but truth be told I’m actually looking forward to it. Prior to beginning the study I was nervous about the many unknowns and felt I didn’t have the time, dreaded the travel and the being away from my family, and was not looking forward to clinic food.   It wasn’t long after my arrival NIH that I knew and felt I’d made the right decision. Dr. Zimmerberg and his team and in fact the entire NIH staff - put me at ease right away.  I enthusiastically  recommend that all LGMD patients seriously consider participating in this important study.