Roadmap to a cure for ALS

“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.”

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.

As of this moment, we do not know how ALS starts or how it progresses. There is no test for ALS. There are no biomarkers to define it so that a diagnosis may occur. The motor neurons that create your body’s electrical system become degraded. These motor neurons carrying signals that travel from your brain to your muscles eventually die, causing you to lose muscle function. Gretchen first experienced what is called drop foot. Later, she began experiencing twitching. She would have me feel her leg, asking “Can you feel that?” She went through a battery of tests looking for a cause, they searched for evidence of Lyme Disease, MS, Parkinson’s, and heavy metal poisoning. A back specialist recommended surgery. When that surgery didn’t work, she underwent nerve testing, and the doctors described her results as “befuddling.” When Gretchen had failed all of the other tests for possible causes, she was given the final grab bag diagnosis that she had ALS. She would describe this moment as the “day the bomb dropped.”

Less than 10 percent of the ALS population is related to known single gene mutations. This is known as familial ALS and it can be passed on to future generations. People who have a familial ALS predisposition will succumb to ALS at some point in their life. I know of one family in the Bay Area that has lost six family members to ALS. There is a 50/50 chance that if you carry the gene, your offspring will also. The remainder of the ALS population, over 90 percent, is categorized as sporadic or meaning we do not know why they got ALS.

In unraveling the mystery of ALS, what we need first is a prognosis biomarker, then a diagnosis biomarker, finally a progression biomarker. To this end, I gathered top physicians to be part of a research council that meets three times a year. Together we review research and reports to figure out what we can fund to further progress. I have attended the International Medical Conferences in locales such as Glasgow and Perth, only to walk away frustrated and depressed. There are numerous papers about research of certain aspects of the disease with no correlation to each other. At the end of each paper being submitted to the medical community, the running dialogue is always, “we hope to receive more funding to further explore these findings.” The research was not coordinated, leading one to feel as if there is no plan or direction. It felt as though research was being done for research sake. The research leads to nowhere; there is no relevant information being applied toward a conclusion. I simply never saw a path forward, so I decided that we needed to create a collaboratively developed roadmap if we were ever going to cure ALS.

Lawrence Livermore National Laboratory (LLNL) has the second largest super-computer in the world. It’s a $400 million super-computer manned by some of the greatest computational biologists in the country. Due to the formation of the Livermore Lab Foundation (LLF), these LLNL facilities can be leveraged by non-mission related activities, that advance the science that LLNL uses to support it’s national security mission. In conjunction with LLF, the ALS CURE Project has funded a study using VA clinical data, because Veterans have a larger occurrence of ALS than the general population, nearly twice the general population occurrence rate. This research is expensive as you could imagine. Another research proposal, a $650,000 project funded by the ALS CURE Project, focuses on a promising physics-based model targeting a specific, naturally occurring protein called TDP-43. In ALS patients, this protein clumps. With the super-computer modeling, we hope to see this protein transform, thereby gaining insight into the mechanics of the disease. This would be a leap forward toward a cure for ALS, and I have high hopes for this project.

Working with LLNL and LLF, we conducted a virtual ALS symposium where we invited the greatest minds working on ALS from around the world. By invite only, 70 researchers from top research universities such as MIT, Harvard, Yale, Northwestern, and Stanford, along with representatives from the Biotech companies participated in creating a roadmap to a cure for ALS. It was a concentrated effort with participants working every Wednesday in October in virtual breakout sessions to identify key milestones and research necessary to complete the roadmap. Together, a plan was created that has the structure needed to keep all ALS research-focused organizations on the same page. It is my belief that if we take these small steps, we will get to our ultimate goal. Armed with this roadmap, and hand in hand with the research, we should finally see some great strides made. I have no problem writing large checks for ALS research, which then empties our coffers. Every penny the ALS CURE Project raises goes toward gaining more insight and finding that cure. It’s money well spent.

Another exciting aspect of our research symposium was the idea of modeling the brain-on-a-chip and eventually ALS-on-a-chip. When we can model the body’s mechanism and run a computer program to see effects, we will significantly lessen the need to use lab monkeys or rats, as science has done in the past. Results from animal models do not always translate to results in humans. This technology may be game changing for many diseases. We are searching for funding for this effort.

We have held some extraordinary events in our organization’s short history. For the past two years on the day before Spring Training games start, the annual Crawford Family golf tournament benefiting the ALS CURE Project has been held in Arizona. Mike Crawford is a long-time friend of mine, his son Brandon Crawford plays on the Giants. As many as 30 baseball players have donated their time, attending the event for the past two years. We also hold a formal Gala annually at the Blackhawk Auto Museum with celebrity guests, speakers, and auctions. In 2021, we are slated to hold our first annual golf tournament at the Orinda Country Club on June 6, 2021. We are currently looking for corporate sponsors and are hopeful for local celebrity involvement.

This year has been quite challenging in a lot of ways, but I see great hope on the horizon. I will continue my cycle of raise, sponsor, encourage, and collaborate in my committed pursuit of a cure. It’s what I promised my wife, it’s what my boys are committed to, and it’s what the ALS community deserves and patiently waits for. My hope is that at the end of this year, maybe folks have a little extra money saved due to activities being less prevalent and they decide to share or give to our charity through their corporation’s employee charity donation programs.

Imagine being trapped inside a body that cannot move, but your mind freely wanders, remembering all it could do just years or months before. Imagine knowing you will never recover from that state. This is the disease I want to end. No one should have to suffer that fate. I truly believe that we have the technology and expertise to cure ALS. Our challenge is to identify high-leverage research, fund it, and conduct it in order to beat this disease. With all the amazing people I’ve met along the way, and help from people around the world, I am confident this journey will end in victory.