In the summer of 2002, Stephen and Barbara Byer were in the midst of enjoying country living in Wisconsin when their 31-year-old son Ben, the third of their five children, was diagnosed with Amyotrophic Lateral Sclerosis (ALS). Neither of them knew very much about the disease, other than it was horrific and fatal within 2 to 4 years. And that Lou Gehrig died from it. In that moment, everything changed. They abandoned their old life in search of a cure for their son.
Unwilling to accept that nothing could be done for their son, Stephen and Barbara began a multi-pronged effort to discover ways to slow, stop and hopefully reverse the progression of Ben’s disease. Over time, Stephen and Barbara amassed a vast knowledge of promising scientific research and drug trials, medical facilities and providers, and treatments for symptom relief by consulting with top neuroscientists, neurologists, researchers and medical specialists as well as with ALS patients and their families around the world. Stephen and Barbara created a circle of support via Internet chat rooms, email and by phone for other families struggling with the devastating effects of the disease, passing on what they learned with compassion and hope.
By the spring of 2008, Ben was confined to a wheelchair, weighed barely 100 pounds, and was unable to move, eat or breathe without great difficulty. Stephen and Barbara continued to receive daily emails and phone calls from ALS patients and their loved ones seeking guidance and help. They listened to the heartache, suggested ways to minimize symptoms and shared current research efforts.
Then, on July 3, 2008, Ben died. Even in the midst of grief, Stephen and Barbara founded ALS Worldwide to honor their son’s memory, keep his fight for a cure alive, and ensure that no one has to face ALS alone.
Today, ALS Worldwide advances the most promising research and brings guidance, compassion and hope to thousands of ALS patients and their loved ones in more than 115 countries. ALS Worldwide fills a unique niche for thousands of desperate people who have been told nothing can be done to help them. Our organization provides free personalized support to people living with ALS via videoconference, email, phone, in-person visits and online resources. We help people understand and cope with an ALS diagnosis, explain treatment options to better manage symptoms, and provide emotional support and guidance on a wide variety of topics to improve quality of life.