“As physicians and sufferers of HIBM, I have long felt that my brother and I have been charged with the responsibility to bring HIBM to a definitive end. As such, the mission of ARM and our own personal life-pursuits are one and the same.
From early on in my pursuit of a career in medicine, I wanted to become a surgeon, never foreseeing that this dream might not be in the cards for me. How heartbreaking to be confronted with a future very different than the one I had worked for so hard!
I first detected something strange was happening to me during my medical training. I loved playing the guitar and I realized that I was having progressively more difficulty plucking the chords. It worried me enough to share with my brother, Daniel, who was also a doctor. He told me that he noticed he was not himself either, that he wasn't running and bouncing on the hospital steps as quickly as usual.
As we began our journey to find an answer, no one could give us a satisfactory explanation or diagnosis. Since we were curious by nature, we started investigating further and searching the medical literature ourselves until we finally found an article that seemed to accurately describe our condition. We learned that Hereditary Inclusion Body Myopathy (HIBM) is a rare disorder that typically presents in one’s early 20’s or 30’s without any advance warning or prior symptoms, gradually weakening the muscles of the limbs and eventually leading to severe disability.
This news, needless to say, shocked and frightened us beyond imagination and it forced me to give up my dream of becoming a surgeon. I switched focus to serve others facing challenges and became a specialist in Physical Medicine & Rehabilitation. My life's purpose, however, would now be defined by a singular quest – finding a cure for HIBM. This became my passion and my ultimate pursuit.
In 2000, Daniel and I founded the non-profit organization, Advancement of Research for Myopathies (ARM). ARM has raised awareness among the general public, but more importantly among researchers and medical professionals. Thanks to the funding efforts of ARM, researchers worldwide are working towards finding a treatment, and I am very thankful and hopeful that within my lifetime we will be able to help all patients who suffer from HIBM.”