Firing a Shotgun to Hit a Needle in a Haystack
“You say you got a real solution,
Well, you know,
We’d all love to see the plan.
You ask me for a contribution,
Well, you know,
We’re all doing what we can.”
John Lennon’s lyrics from the song “Revolution” by the Beatles capture some of my concerns regarding the holy grail-like quest for an ALS cure.
Theorized solutions abound. However, no believable plan is forthcoming. Contributions are solicited, but unlike Lennon’s assertion, I’d ask whether we’re maintaining the proper balance. Independent of that answer, another important question springs forth: Is whatever we’re doing being pursued in the most efficacious manner possible?
Those issues torment me periodically. Maybe it’s the byproduct of having to spend so much aimless time in solitary confinement, but my mind tends to wander now more than ever. My mental meanderings typically favor a positive trek. However, there are times when an unintentional provocation will summon the pessimistic worrywart in me.
The most recent example occurred last week. The trigger was a torrent of emails from ALS advocacy organizations that coincidentally arrived over a three-day span. Singularly received, they are a welcome source of news, analysis, and human interest, from an at least partially parochial vantage point. But when grouped together, I couldn’t escape the intuition that there might be too many cooks in the kitchen.
Each missive, in addition to dispensing a timely dose of e-news, asked for money. In every case, the lion’s share of any contribution would be spent in support of the greater ALS community. However, proceeds would be directed according to the recipient entity’s agenda. The dollars may find themselves deposited anywhere along a continuum that stretches from pure research toward a cure to solely patient sustenance.
For example, the ALS Therapy Development Institute is singularly focused on “everyone with ALS having effective treatments.” At the opposite end of the spectrum sits Team Gleason, whose vision is a “world where people living with ALS have the resources and the opportunities to not only continue living, but continue living productive, purposeful, and meaningful lives.”
Both are laudable missions, but they have little intersection. A sort of Catch-22 paradigm is in play. I’d gladly forgo many creature comforts for a foreseeable end to ALS. But the fear, grounded in history, that all such sightings are merely mirages tempts me to opt for a more bearable yoke.
Occupying the middle ground are organizations like the Muscular Dystrophy Association and the ALS Association (ALSA). Both seek to promote quality of life while simultaneously making impactful research investments. There also are regional consortia that strive to serve the ALS community in their respective “backyards.” Having lived in three dissimilar localities after diagnosis, I maintain currency with some of those geographic-centric groups as well.
ALSA’s research funding model is fairly representative of the global effort. For 2021, they are sponsoring 165 active projects in 11 countries, at a price tag of $55 million. That scattergun approach has failed to produce a single direct hit in the ALS house of mirrors. Even shrapnel contact is rare. Firing piecemeal salvos at needle-in-the-haystack prey has proven maddeningly frustrating.
Target ALS was founded to address “siloed research” and “bias in funding decisions,” among other aims. As a casual observer, I agree with both assessments, but the notion that the creation of yet another donation reservoir will solve either issues carries irony. I hope the $37 million they raised last year was incremental to the cause and not diversionary.
The care side of the scale is similarly fragmented. The more awareness a locality has about ALS devastation, often driven by census, the larger the aid menu becomes. In rural outposts, cupboards are barer. Population centers tend to offer more support services with a greater infusion of technology. If one resides in the vicinity of one of the 140 NEALS member sites, an ALS “Emerald City” may beckon.
The book “Simple Church” by Thom Rainer and Eric Geiger statistically correlates the institution of a simple discipleship process with a rise in church vitality. Their data suggest that the time-honored leadership tenets of clarity, movement, alignment, and focus are necessary process elements. While all of my email senders individually demonstrate those hallmarks of success, in unison, they’re lacking.
Nearly 15 years ago, I was diagnosed with ALS. If asked then what I would predict for the ensuing decade and a half, my death and a subsequent cure for ALS would head that list. Then, like now, I was completely clueless about the future.
That said, might uniting all the noble but disparate ALS organizations under a common umbrella accelerate progress? They could rally around another Lennon tune and “Come Together.” Is the grail gettable then?
That answer, much like my prognostication skills and everything in the ALS ghost chase, to quote Bob Dylan, “is blowin’ in the wind.”
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