March 27, 2017, (c) Leeham Co: It wasn’t the kind of presentation usually given at the ISTAT general meeting earlier this month. Peter Warlick, vice president of finance for American Airlines, announced to nearly 2,000 people that he has ALS (Amyotrophic Lateral Sclerosis), more commonly known as Lou Gehrig’s disease.

ALS attacks the muscular system and is typically fatal within two-five years. There is no cure.

Warlick actually revealed his condition last year, but I missed the announcement in which American also pledged a $1m donation to ALS research.

Although Pete is only a casual business acquaintance, for me, Warlick’s ISTAT announcement hit home. In 2015, a very close friend and colleague died of ALS several years after diagnosis. Stan Bump was a neighbor and I served with Stan on the planning commission in the Seattle suburb in which we lived.

Early symptoms

Bump’s first symptoms were a slight shaking in the hands—which I attributed to early onset of Parkinson’s disease—and a thickening of the speech. Bump, a retired Rear Admiral, went to the Veteran’s Hospital for answers and it took quite a while to diagnose ALS. For some unknown reason, Naval personnel seem somewhat prone to ALS. Eventually, Bump was confined to a wheel chair and needed oxygen support. He died when his liver finally failed.

Pete’s diagnosis, on the other hand, came in a round-about way.

“I did poorly on a stress test,” he told me in an interview last week.  The shortcoming was not related to the heart and lung, the usual focus of stress tests. Rather, “my legs couldn’t keep up on the incline. I did poorly there. I noted that I had for several weeks, not very long periodic twitching in the muscle in right quad.”

Pete also noticed a numbing and weakness in the right toe. The left toe was stronger, showing muscular imbalance. Visits to a to neuromuscular specialist led to the diagnosis.

About ALS

ALS was discovered almost 150 years ago. It received its more commonly known name in 1939 when New York Yankee Lou Gehrig was diagnosed. The ALS Association explains, “ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death.” Paralysis is often experienced at the end.

Steven Hawking is perhaps today’s most well-known ALS victim. His experience was memorialized in the movie, The Theory of Everything.

“There are different gene mutations,” Pete said. “It presented itself in my right leg. The typical person lives 2-5 years’ post-diagnosis. “[It’s been] 18 months and I’m still coming to work. Clearly, I am going to exceed the two-year mark. How far beyond the two-year mark is still to be determined. The variant I have appears to be one of the slower progressing forms.” He uses a walking cane for support.

Pete’s energy level is strong and he’s working a full schedule and then some.

Warlick’s Warriors

Pete was diagnosed in 2015 and went public with it the following year. He is upbeat and driven by a mission to help fund ALS research. Pete created an organization called Warlick’s Warriors, to disseminate information about ALS and to raise money. More than $2.5m has been raised so far. The goal is $5m.

“We’re trying to seek to identify, not just one ALS but a number of distinct variations,” he said. “the intent is to identify these distinct variations to treat and personalize therapies.”

Pete compares ALS today to how cancer was diagnosed 40 years ago.

“When someone was diagnosed with cancer, there was one treatment, whereas today instead of asking, ‘where is the cancer, you ask, what is the cancer?’” There is specific treatment for specific cancers today, rather than a general treatment.

“ALS today is like cancer 40 years ago. The only question we ask is, where is it affecting the person?” Pete says. “As a result, we’re trying to identify the different types and develop therapies for that variation.

“You go in at molecular and biochemical level into its basic components. You can do that now, where you couldn’t a number of years ago.”

Analysis is broken down into enzymes, proteins, six billion pieces of data per person,” he says. “We now have big data analytics who are able to manipulate large volumes of data and look for patterns.”

Taking stock

“When I was diagnosed, I thought about it in three different work streams,” Pete recalls. “Who was going to take care of me, which doctors? Second, there was my personal, family, children and financial situation. Third, I thought in the back of my mind, I’ve got this unfortunate diagnosis. Is there a way to leverage myself? I was aware of two other people in companies, executives. The three of us working together is more valuable than working independently. I began thinking about, how do I want to make a difference? Who are the smart people in this field? Who can make a difference? What are the principals that can be followed?

After his own research, Pete settled on Answer ALS.

“This opportunity versus some of the other ones made a lot of sense to me,” he said. The scientists work collaboratively, rather than independently, as do top institutions.” The IBM big data analytics equipment is large enough to handle the billions of data points.

“All of the results being produced are going to be provided open-sourced,” he said.

“My objective of the [Warlick’s Warriors] Aviators Against ALS is a campaign to leverage myself and people I know,” Pete says. “As an industry, we have tackled tough problems, united to attack issues. While we are fiercely competitive, we recognize the industry works very well together on challenging issues.”

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