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 ALS CURE, to lead research towards a laser focused goal of coming up with a cure for ALS.  With the support from SVCF, I am able to operate this effort, without any ALS CURE employees.  I work for ALS CURE 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.  

The ALS CURE Project, has two core objectives:

  1. Leveraging the profit motive and research funding portfolios of biotech and pharma companies, we are creating a business model which will award a large cash grand prize to the company producing the cure for ALS.   The grand prize will be funded through philanthropy.  The prize will be awarded when the ALS cure is confirmed and the philanthropist accepts an anticipated Nobel Prize.
  2. To accelerate the timeframe associated with producing the ALS cure, the ALS CURE project will raise funding and conduct project scope oriented research targeted at establishing ALS Biomarkers which will be made public to aid the biotech and pharma companies in producing the ALS cure.

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.