ALS (amyotrophic lateral sclerosis) is classified as a rare disease. Only 6,000 people get it every year in the US, and there are approximately 18,000 to 20,000 ALS patients throughout the US. It’s not as large a population as the 700,000 who have MS, nor does it measure up to the 2,000,000 patients currently fighting cancer. This low number of patients living with ALS is largely because sufferers generally die within three to five years of contracting the disease. My wife, Gretchen, was diagnosed with ALS in 2017. I watched her deteriorate rapidly over 16 months, and after her passing in 2018, I vowed to dedicate my life to working toward a cure.
A large part of my three sons’ early years were spent on the baseball field. I coached national championship teams and learned that every year, along with incorporating new players, there was a wide range of elements in play. You must know how to utilize your team’s strength, bring them together, and harness their combined skills in order to reach a victory. My approach to finding a cure for ALS is modeled after the lessons learned on the baseball field. Along with my sons Stephen, Nick, and Austin, we created the ALS CURE Project, a 501(c)(3) US charity–in honor of Gretchen.
Stephen played for the Saint Louis Cardinals before being traded to the Oakland Athletics. The trade happened during the offseason before the 2019 season and was the winter before his mother passed. We felt fortunate to have him close to home so that he could spend that time with her. ESPN learned of Gretchen’s condition and asked if they could come do a story in our home. I asked Gretchen, “Is this alright with you, to have a camera crew in here?” Her reply perfectly illustrated her unselfish and giving nature, she said, “As long as it will help others, yes.” Gretchen was on a machine to help her breathe and wasn’t walking. For two full days, ESPN witnessed the fight we were enduring. It helped us to shine a light on the disease, but it was just the beginning.
My professional career has been in the software development project management realm, and I work at Lawrence Livermore Labs in the IT department. I know how to put a plan together and focus on the steps it will take to make things come to fruition. I’ve been in front of a huge wall with task stickies, moving around integral parts that define needs and capabilities in order to find a miracle–a breakthrough. I was about to start on a path that would ultimately lead to a cure, a cure that could give me the opportunity to witness treatment for ALS patients during my lifetime. I pondered where to start. Gretchen was under the medical direction of Dr. Jon Katz of the Forbes Norris Center. Dr. Katz is the Chairman of the ALS Project Research Council, an international ALS research collaboration. I took Dr. Katz to an A’s game and as we sat behind home plate, I asked him, “Jon, how do I do this? Don’t take this personal, but you’ve worked at this for 18 years and we are no closer to solving this puzzle. With all our modern technology, we can literally look into a person’s brain or organs of their body, yet the last drug offered for ALS treatment was introduced in 1984 and only slowed progression down by 10 percent. Why are we only this far?” He shared a little on the economy of marketing pharmaceuticals to such a small percentage of the medical-needs community. Overall, the conclusion was that although research was being done to examine certain aspects of the disease, furthering the efforts toward a cure would need to be both managed and generously funded. I now had a goal, and additionally a second full-time job, one that was a commitment of the heart and would pay with each milestone victory. My son Stephen and I started the ALS CURE Project to cure ALS. The ALS CURE Project raises funds needed to do further research toward vital research goals under the direction of Dr. Jon Katz and the other members of the ALS CURE Project Research Council.