Firing a Shotgun to Hit a Needle in a Haystack

Rick Jobus avatar

by Rick Jobus |

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“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.

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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.”

***

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, and are intended to spark discussion about issues pertaining to ALS.

Comments

Ellyn Maloney avatar

Ellyn Maloney

Well said, Rick. Been thinking this for years but no easy answer.

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chris john Beutler avatar

chris john Beutler

Your observations are astute and merited. But you are not alone. I would read Dr. Merit Cudkowicz from the Healy ALS Clinic in her statement to Congress. She addresses many of your observations.

https://www.massgeneral.org/neurology/als/news/2021-07-29-merit-cudkowicz-house-testimony

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Bill avatar

Bill

All so true, Rick. At times, I feel I our disease is a cash cow to fund the drug development industry. Our stories and pushes for early access to stuff which is very borderline at best is used to generate investment and bolstering stock price increases for biotech firms. I notice a lot of the announcements are made through investor development platforms. I’m glad the Healy platform is trying to do business a little differently.

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Doug Powell avatar

Doug Powell

I too have often thought that a central umbrella organization would be better able to coordinate all the disparate advocacy and research groups. How much redundancy, over-lap of services and wasted effort does this cause?
Would this be better handled by a government agency such as the FDA or a non-profit group?

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Farmstrong avatar

Farmstrong

Such a great post! I was hoping I AM ALS (IAA) would be the organization that connects all the others and helps them reduce the expansive duplication of effort and the missing of key initiatives that would make ALS treatable.
From my observation, IAA has made great strides in such a mission, but it still has quite a long way to go if it is to be "the one ring to rule (organize) them all". And of course, the problem is an enormous one to take on, especially because it has been left to fester, unattended, for 30 some years. All the more reason to take it on, though!

IAA has made great strides in getting NurOwn & other working therapies closer to being in bodies -- therapies stalled mainly because they came from small pharma but also because of lack collaboration across the ALS orgs, lack of a leader to organize them all, & ALSA not funding the most promising research.

I was thinking a great initiative for IAA to take on would be to start to add structure (to enhance collaboration at least) to all the orgs.
For example:
- Everything ALS should head up information exchange. That org is amazing at knowing what questions pALS have at the exact moment they have it... they are great about setting up webinars with the best experts on the given topic.
- I AM ALS - stellar at getting critical legislation passed, educating the FDA and key orgs on ALS, and raising general awareness
- Local ALSA chapters - great at helping pALS get equipment they need, holding support groups, etc.
- Team Gleason - amazing at innovating technology for pALS (I think we need another tech org, though, to make sure the more "mundane" day to day stuff gets innovated, like desktop operating systems supporting eye gaze beyond Windows 10 and one billion other things like that, etc.)
- Your ALS guide - provides great videos and resources for pALS and cALS (let's add a "how to trach suction" there!!) A Life Foundation also has good instructional and practical videos.
- NME - an incredible watchdog and amazing at getting critical information out quickly to pALS. Amazing at tracking treatments that work that are stuck in the pipeline for all the messed up reasons they get stuck
- HealingALS.org - these guys have so much expertise on supplements and have studied commonalities across ALS reversals - they have so much to offer. They also have an amazing support community.
- I'm sure I'm forgetting so many

Anyway, thanks for letting me rant here! ❤️

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Norman S. avatar

Norman S.

Seems to me that in order to fix a problem, you need to know what the nature of the problem is, and why and how it is happening. Once you determine those, you can take appopriate action. I see news splashes every other week of some "discovery", which is great! That's what we need to figure out: WHY we are getting this!

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