(Before I go too deeply into “why” I choose Team Gleason as a main area of my giving, there should be an expectation when reading this that ‘giving’ is good. Since this site focuses on using your time wisely, giving is paramount. Nearly every religion, philosophy, and even the ever-growing list of “self-help” books have a common theme in stating that giving is the crux of a life well lived).
As much as I hate to admit it, working in the insurance industry has influenced my thinking. The principals of operating have spilled into my life outside of the office doors. That’s right. What’s often considered one of the more boring industries has even shaped the way I give.
Let me explain.
Insurance is one of the most analytical industries in existence, requiring more nuance than most folks realize. I won’t sit here and tell you it’s the “sexiest”; that would be a lie ( and convincing people otherwise is of no use either. Any time I’m meeting someone and they ask “what do you do?” and I say “insurance”, the topic is swiftly ushered elsewhere to the likes of music, Netflix, running, brewing beer, etc).
In the insurance profession, we describe claims against policies using the terms “frequency” and “severity.” For example, when evaluating a business’ application for insurance, we look at their claims history. If there’s many, we may say they have a “frequency” problem. If they have only have a few, but they are large, high dollar claims, we describe the company as having had issues with “severity.”
To give another example, in the US we have a problem with our weight – some 74% of the US population registers as overweight or obese; a “frequency” problem. 7% of the US population is MORBIDLY obese; a “severity” problem.
When we choose charitable organizations in which to involve ourselves, we are hoping to address a problem. While a few charities get the lion’s share of attention ( Susan G. Komen’s charity for Breast Cancer, or the United Way whose program addresses a laundry list of societal issues), many just don’t get the air time. Also, we often end up choosing something highly personal. Maybe we’ve known someone ( or ourselves) that has been the victims of a specific kind of cancer. Maybe we grew up poor and unsure of the next meal, so we focus on expanding healthy food access. There’s nothing wrong with this approach, but let’s challenge ourselves to take the focus off….of OURSELVES.
When thinking about this, I wanted to help address something that was common ( frequency) but also grave ( severity). It was almost like the right organization smacked me right in the face. This was stewing in my head in the Summer of 2016 when I attended a Pearl Jam concert that August at Wrigley Field in Chicago. There was a video for a documentary movie named “Gleason” on the large Stadium Screen keeping concertgoers occupied before the band started. As I watched the longer trailer of the film about former NFL Player Steve Gleason and his road with ALS ( also known as Lou Gehrig’s Disease), I struggled to keep it together ( and this was before a single note of Pearl Jam music had been played!). Later that evening during the best concert I’d ever seen, Steve Gleason himself came to the stage in a motorized wheelchair and spoke to the crowd using his eyes and a voice assistant before they launched into “Inside Job.”
When I got home, I watched “Gleason” and saw the havoc that ALS tore on his body. While he wasn’t the first person I had knowledge of ALS taking away their ability to control their body, what I saw would not leave me. It often starts with shaky and weak hands; the grip starting to fail. The weird and constant muscle twitches that cannot be controlled. The brain willing the foot to point upward in dorsiflexion, only for it not to respond to take steps, resulting in falls. The breathing becoming labored. Your lips unable to form words. All of this, while your mind remains alert and acute, processing the demise of the body’s inability to process it’s signals and demands. People who receive this diagnosis know it’s terminal, and maybe the largest cruelty of it all is the complete awareness and knowledge of each loss of your motor function ( Severity). As all of this began happening to Steve while at a crossroads with his professional football career, he chose to film much of it. Seeing his fighting spirit then, and seeing it now, continues to drive me to help.
…And Help with a capital “H”, is certainly needed. Steve and his family knew that he could be a catapult for the fight against ALS, so they created Team Gleason. The road to a cure and development of technology to enable ALS patients is fraught not only with the debilitating disease itself, but also serious economic challenges. THIS is where thinking about both “frequency” and “severity” come in. The average life expectancy of someone after being diagnosed with ALS is 2-5 yrs. TWO to FIVE YEARS ( Severity)…. All while having nearly every physical ability taken away. Time is of critical importance. Also, for drug and technology companies, the economic incentive to develop and test potential drug therapies as well create mobility solutions isn’t there. If you’re thinking of your own company’s survival, do you spend precious resources on a narrow patient base ( there are 50,000 cases worldwide/ yr) OR do you focus on something with a large market like diabetes? (* The U.S. population alone has over 120M people estimated with diabetes and pre-diabetes; Frequency ). Because of the economic roadblocks, human compassion and ingenuity must prevail. Luckily, there are people and companies willing to join the fight against ALS, and funding from people like us help make it possible by bolstering economic conditions to create an environment where their work can have high impact on the lives of ALS patients and caregivers.
Team Gleason’s work in helping provide assistive technology for ALS patients is the primary focus, with over $15M in funds thus far. They helped recruit Microsoft to develop technology to have ALS and other neurodegenerative patients be able to drive their own wheelchairs with their eyes. Team Gleason also has assisted ALS patients to do “voice banking.” This technology allows those losing their natural speaking voice to access files that audibly create and model a synthetic voice unique to them. The voice allows for usage of smart home devices ( like Alexa, etc) to make daily living functions more accessible.
Team Gleason also works on providing respite care services for the caregivers of ALS patients. Being an all-consuming task for those who have undertaken, allowing for brief or more extended breaks can be very helpful in maintaining the fighting spirit. The foundation also turns ALS patients’ dream trips into realities. If a patient wanted to take a hunting trip when they were able-bodied, they find a way to make it happen with technology, volunteers, and a strong-will. When ALS patients learn of their disease, many will pre-maturely turn away from experiences they would have undertaken prior to diagnosis. The folks at Team Gleason don’t accept that, and design adventures that work through or around the physical limitations of the ALS families they serve.
On a personal note, I’m not entirely comfortable showcasing where I give. It could come off as “preachy” or “virtue signal-y.” It’s not something I bring up in natural conversation often, BUT… I understand that there is power in seeing. Even if I have a small platform, it’s important to shine a light on work that is IMPORTANT, and Team Gleason’s work is very much that. Maybe you or someone have been looking for a worthy cause to contribute time and resources, and this struck a chord. I would hate to miss that opportunity. I’ve outlined my reasons for supporting Team Gleason, including the influence of my career, the fact that ALS strikes at random vs being a lifestyle disease, and that there is no true economic market to create solutions; only people willing to care and work. Whatever it is you choose, choose wisely. A life of giving is central to just about every philosophy, religion, self-help book, …pretty much all of them, right? The world needs your contribution. Whether you choose Team Gleason, or another cause, we’re all better when we give.
Andrew L Hamilton 