First, We Must Answer the Key Question: What Is ALS?

It’s complicated.

That trite, two-word sentence has become, in the age of social media, the go-to characterization of any couple whose pairing defies analysis. In the best case, after a period in which their union damages one (or both) of them, the parties agree to go their separate ways. Worst case, one of the twosome attaches itself to the other with leech-like tenacity and parasitic intent. Tragically, some conclude with a eulogy, perhaps invoking this variation of the above refrain: It was complicated.

My relationship with ALS is clearly of the love-hate variety. I HATE it. Yet, despite my consummate loathing, ALS loves me. How else does one explain its nonstop, 24/7 refusal to leave me alone? And just what attracted it to me in the first place?

The accumulation of misfolded proteins? My sodium channel acting up? The hyperexcitability of my neurons? Perhaps changes in my genome’s chemical makeup? Were, unbeknownst to me, epigenetic and genetic switches thrown, signaling I am “easy”? Could it be that my mitochondria (intracellular power plants) went on strike? Have I allowed free radical buildup, thereby increasing oxidative stress burden? Is toxic substance exposure in play? Have my astrocytes pulled a Benedict Arnold? Are my microglia napping? Is there a macrophage and T-cell conspiracy to infiltrate my nervous system? Have my oligodendrocytes stopped delivering metabolites, contributing to motor neuron power loss, energy drain, and eventually their destruction?

Complicated indeed. The problem is that I don’t have the answer to any of those questions. Neither do the ALS relationship gurus (aka the scientific community). It may be that an affirmative answer to one, several, or all of those questions solves the mystery. Even more confounding is the notion that a heretofore unasked query may have implications. Sadly, we don’t even know what we don’t know. With no known root cause, ALS spares no demographic. For now, one cannot exercise, diet, medicate, relocate, vaccinate, or nutritionally supplement out of being at risk.

The harsh reality is that ALS is an indiscriminate serial killer. With that stark imagery in mind, think of how law enforcement begins the manhunt for a heinous criminal. They endeavor to develop a profile of predator and prey. The theory, of course, is that the fastest way to capture a killer is to think like one. Part of that is understanding how the fiend chooses its victims.

A similar strategy is being pursued to arrest the ALS perpetrators. Last month, a good friend of mine forwarded me an article about Answer ALS. Its mission is to compile the most comprehensive database of clinical, genetic, behavioral, molecular, and biochemical data on people living with ALS.

Later, after manipulation by artificial intelligence and machine learning, this profiling treasure trove will be made available to researchers. The hope is that they will be able to analyze the data to uncover new insights about the causes of ALS and then develop possible treatments.

Microsoft is investing $1 million in cloud-computing resources, eventually making this impressive repository of valuable data openly available to researchers around the globe. With a goal of 1,000 patient participants and the amount of data collected per participant being over 6 billion data points, this is expected to take several years.

Like many noble and wise initiatives, it’s not the only one. In fact, at least three other data gathering efforts are concurrently being pursued.

The ALS Therapy Development Institute offers a Precision Medicine Program aiming for 750 participants (77 percent complete as of Jan. 4). Survey information, blood samples, skin biopsies, and DNA fingerprints are collected, which are used for genome sequencing.

PatientsLikeMe has their DigitalMe program, which purports to utilize the most advanced scientific resources available to examine the RNA, DNA, proteins, antibodies, microbiome, and metabolites of ALS sufferers.

The Centers for Disease Control manages the National ALS Registry, which basically is a patient-volunteered, canvassing effort. Subordinate to that resides the National ALS Biorepository, established to collect biospecimens nationwide and recover postmortem tissues.

All of these approaches are opt-in. Three of the four have a snapshot of me. I will investigate Answer ALS to determine if there is a way for me to participate, given that none of their clinic sites are geographically convenient. All four organizations have different data collection and data mining methodologies, but the goal is a common one: stop ALS in its tracks. If there are no “pride of ownership” issues among the four services, the data pooling potential is enormous. There could be an outcome robust enough to personalize treatment strategies by defining biological subtypes of people with ALS. The goal is not to live longer with ALS, but to live without it.

Sure, it’s complicated. But, with our help, it’s increasingly possible.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ALS.