Approximately 30,000 people worldwide suffer from ALS (Amyotrophic Lateral Sclerosis), better known as Lou Gehrig’s disease. Each year, about 6,000 people are diagnosed with ALS. Once diagnosed, almost 50% of all ALS sufferers die within two-years and within five-years, nearly every ALS sufferer dies. There is no cure for ALS.
ALS is a neurological disease where motor neurons from the brain stop reaching one’s voluntary and involuntary muscles. When muscles no longer receive neurons, muscles cease to move and the sufferer becomes paralyzed. ALS sufferers become trapped inside a body that doesn’t respond. Eventually, ALS patients lose the ability of their involuntary muscles, namely the ability to breathe, and subsequently patients lose their life.
Augie Nieto is on a quest to find a cure for this devastating and nearly hopeless disease. As the co-founder of Life Fitness Inc., Augie helped to popularize the fitness industry. Much of the equipment you see in your local health club is from the company Augie co-founded.
For most of his adult life, Augie has embodied living a healthy, active life. But in an ironic twist of fate, Augie was diagnosed with ALS in March of 2005. At first, he wallowed in pity and attempted suicide. Then, he resolved to use his business skills to find a cure for ALS.
However, the business case for finding a cure to ALS is difficult to make. Pharmaceutical companies will invest billions of dollars every year on research to find cures for diseases. Drug companies invest these billions because they seek to get a significant return on their investment by providing medicines that the masses will buy to cure them of a disease.
Since only 6,000 new cases of ALS are diagnosed yearly and at any given time, only 30,000 people worldwide live with ALS, a very small market exists for the drug companies to earn money from a drug that cures ALS. In other words, ALS is not a profitable disease for pharmaceutical companies.
Along his quest to find a cure for ALS, Augie met a kindred spirit in Sean Scott. Sean is a television commercial director by trade but an ALS researcher by passion.
The ALS disease has profoundly impacted Seans’s life. His mother died from the disease and so have five of Sean’s grandmother’s eight children. Sean is genetically predisposed to ALS—which means he runs a much higher risk of being inflicted with the deadly disease. Because of this, Sean has dedicated his life to learning as much about ALS as possible. Despite having no medical research training, Sean read every neurological textbook he could find and became expert in ALS research. Sean also became frustrated at how non-collaborative all the ALS research findings were.
When Sean and Augie met, a friendship and life-long partnerhsip developed. They both shared the frustration of how ALS research suffered from a silo mentality where academics and researchers, being protective of their data, rarely shared their findings with one another. They also shared the belief that researchers were behaving too much like academics and not enough like healers.
Together, these two are setting forth to change the research process for finding a cure to ALS.
Sean Scott is today the president of the ALS Therapy Development Institute (ALSTDI). The ALSTDI is involved in groundbreaking ALS research, which is openly shared and not privately-kept.
And as the ALS disease marches on rendering more of Augie’s body unresponsive, he continues to work on making the business case for why and how it is profitable for drug companies to find a medical cure for ALS. Through his Augie’s Quest Foundation, he has raised millions of dollars for research into studying the disease in order to find a cure.
You can learn more about Augie’s life and his quest to find a cure for ALS in the just-published book, AUGIE’S QUEST: One Man’s Journey from Success to Significance.
I share this story with you as Thanksgiving 2007 approaches because my mother, Glenna Moore, was born this Thanksgiving day in 1936. Unfortunately, she will not be with her family to celebrate all we are thankful for. Glenna passed away as a result of the ALS disease on July 27, 2007.
I am thankful for everything my Mother taught me and gave me. She will be missed this Thanksgiving.
