OUR EARLIEST DAYS
Our son Ben Byer was diagnosed in 2002 with ALS. The world as we knew it changed dramatically. His father, Steve, turned to the internet and launched a multi-pronged effort in search of the ‘cure’ that we fully believed had escaped western medicine’s awareness. Research through medical websites revealed not much had changed since Dr. Jean-Martin Charcot identified the disease in 1869.
Steve approached the search with the acumen of his successful background as a businessman, used logic to explore potential scientific avenues, asked probative questions, consumed technical research, and shared his insights. Steve communicated with researchers, neuroscientists, neurologists and other medical specialists. He logged onto ALS chat rooms and created a circle of support with other patients and their families throughout the world – Saudi Arabia, Israel, China, India, Hong Kong, Greece, Argentina, Germany, France and many others.
In the spring of 2003, Steve found a little known herbal compound from China, BuNaoGao, that proved beneficial for Ben. He assisted the fledgling company to make it readily available to the ALS community. Within a year, Steve developed a following of ALS patients and their families who sought his guidance, reassurance, compassion and most of all, his interpretation of the myriad of information that bombards the ALS community.
We’ve moved from the Industrial Age to the IT age and still this disease confounds brilliant minds. Ask ten people and at least one has intimate knowledge and experience with ALS. A son-in-law’s grandfather, a friend’s aunt, a workshop attendant’s mother. Make no mistake. This virulent disease makes people turn away in horror but it has affected someone you know. They just don’t talk about it.
Within these pages exists information about new therapies, current research, stem cell facilities, ways to minimize discomfort, emotional support, shared experiences and efforts to secure governmental support and intervention.
Ben died on July 3, 2008. In Ben’s name, honor and spirit, we continue his valiant battle against ALS. ALS WORLDWIDE remains committed to ALS patients and their families until a cure is found.
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