“The purpose of life is a life of purpose.” ~Robert Byrne
“A man content to go to heaven alone will never go to heaven.” ~Boethius
“When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, “I used everything you gave me.” ~Erma Bombeck
“The person who says it cannot be done should not interrupt the person doing it.” ~Chinese Proverb
When I realized that I was going to be disabled – slowly, relentlessly, and without reason or justice – I gained courage. When I met others with the same problem, I learned compassion. When we realized that it could be healed scientifically, we touched hope.
Soon after I started to show symptoms of HIBM, I realized that the only way to speed up the research on this rare disorder was to dedicate my life to doing it myself. Initially, I sought help from renowned scientists in the field of muscle disorders and genetic diseases. During 2001 - 2004 we established HIBM Research Group (HRG), a non-profit molecular laboratory dedicated to advancing biomedical research towards a cure.
Since then we have accomplished much with very limited resources. We have made genetic tests for HIBM available for anyone, we have supported researchers worldwide with needed research bio-material and so we have moved research to the point of clinical trials. This is an unbelievable accomplishment considering how little funding we had! And funding continues to be our greatest obstacle as we move into this next stage.
When people ask what is most important to me, I smile and wonder why it's not obvious. Without a doubt, the patients are the most important. I feel that every patient is family. They motivate me to strive forward, if necessary, expand the technology towards finding a cure.
HIBM is an enzyme-related disorder that only affects skeletal muscle in most patients, and enzyme related muscle disorders are usually less difficult to cure. From what we have already learned, we fully believe the cure is within reach.”
For further scientific details, please contact HIBM Research Group (HRG) at 818-789-1033.