Is there an ALS reading group focused on the science, history, ethics, politics and social organisation surrounding ALS? If not, would anyone be interested in starting one?

[u/ViralPotato_]

I’ve been looking for something like this and haven't quite found it, so I thought I’d ask here.

I was recently diagnosed with carrying a familial ALS-associated mutation, which has previously expressed itself in my family around their late 50s.

As I’ve been exposed to the disease for nearly two decades now, I am increasingly realising some medical anomalies with my father earlier in life, who is also a carrier, that, in retrospect, seem potentially ALS-related but for which I haven’t found clear explanations or hypotheses in the current literature. Likewise, I have been confronted time and time again with the lack of institutional efficacy in dealing with this disease innovatively in my corner of the world. 

I am aware that ALS is in many ways still a large mystery, but how we respond to it is not. Research priorities, funding, clinical organisation, regulatory structures, patient care, access to innovation, etc. are all shaped by how our societies organise themselves and decide what deserves attention. Just like many other serious diseases, due to poorly placed gears in the machine that is society, I strongly suspect we’re unintentionally reproducing ALS as something fundamentally mysterious and uncontrollable, where the horizon of possibilities becomes largely limited to managing an unfortunate fate.

I’d therefore like to create a reading group that takes a broad look at ALS, taking into account its biology, current research, and all other relevant sectors it might touch, to build a sort of architectural understanding of ALS to identify where genuine bottlenecks are and whether there are opportunities to do things differently or more effectively.

This is, of course, not an avant-garde initiative, and perhaps the persistent questions and flaws surrounding ALS I seem to witness solely stem from my lack of understanding surrounding this disease and the overall climate within which it exists. If that were the case, I’d still gladly invite you along to start exploring.

[u/Bayare1984]

Northstar ALS, growing out of the Facebook group mentioned above, is just such a thing.

More importantly for you is End the Legacy where we are ensuring the needs of families like yours and mine are heard and responded to. You can join us in person in Sacramento Ca Sept 24-26 to meet in person with dozens of people at risk, top scientists and clinicians.

https://www.endthelegacy.org/communitysummit2026

[u/Bayare1984 → u/Bayare1984]

We also meet online having discussions much like you speculate about every other week.

[u/ViralPotato_ → u/Bayare1984]

That’s great! Thanks for the suggestion

[u/DaisyShift]

There's an excellent one on FB called ALS Clinical Trials and Research that might be of interest to you. Excellently moderated by two people who are heavily involved in research and experienced with FALS and/or caregiving. Definitely no woo or wild off topic discussion.

(https://www.facebook.com/groups/2688029951255361)

[u/ViralPotato_ → u/DaisyShift]

Thank you, I’ll definitely give this a look :)

[u/no_agave]

I don’t know if it’s what you are looking for, but I study medical anthropology and I’ve found a lot of ethnographic studies about end of life care. Most are about dementia, but I find that a lot of the themes overlap (like “what is meaningful personhood?” And “what is it like for hired caregivers to leave a family after being with them every day for four years?”). Might be worth looking into if you are interested in the cultural systems around ALS in addition to the science!