ALS is a horrendous disease attacking the neuromuscular system of the body, slowly and systematically rendering the person paralyzed and unable to breathe.
The journey is emotionally exhausting for family and friends as you watch your loved one wither away, becoming trapped in their bodies. As awful as this disease is and with the extraordinary medical advances giving us unprecedented views into the human body, a new drug for ALS hasn’t made it to market since 1995, leaving those with ALS and their families with little hope. ALS is classified as a rare disease with a much smaller population (20,000 US) of people effected than that of cancer (2 million US). Thus, the profit potential of an ALS drug is limited and companies tend to invest where the profit potential is greatest.
Further accentuating the hopelessness is the lack of any ALS Biomarker, which is critical for drug development. There is no test for ALS. It is sadly the disease you have when you fail all the known disease tests for AIDS, MS, Parkinson’s etc.
Following the passing of my dear wife Gretchen in May of 2018, I made good on a promise to her to work towards a cure for ALS so “nobody would have to suffer my (Gretchen’s) fate.” I have created a not-for-profit organization, known as the ALS CURE Project, to lead research towards a laser focused goal of coming up with a cure for ALS. As an 100% volunteer-based organization, we can operate this effort, without any ALS CURE Project employees. I work for ALS CURE Project gratis and expect to continue in that manner such that all funding raised will go directly towards our one goal of curing ALS from humanity.
I have personally socialized the business model with researchers from biotech and pharma companies, ALS clinical researchers, ALS patients, and external business leaders. The approach appears to be very promising and the notion of this program is bringing hope to the ALS community which hasn’t had a new ALS drug developed since 1995.