"Livable disease"?

[lgelb]

The local ALSA's "hybrid" annual gala fundraiser invitation on Facebook highlights that they want money to make it a "livable disease." If that means that one day it will not be fatal, that would be nice, but that is years from now, and it is disingenuous to use that in a fundraising pitch. Likely the product of a shaky content writer, it is also a slur on the people who actually live with it.

A pitch about what ALSA does to help people who are "living with ALS" now, today [not enough!] would be far more on point, as would at least mentioning Covid [the ALSA site's last update on its Covid page was in November 2021]. Instead, I'm reading about wine and appetizers, and we don't have a care in the world, just a "let's party like it's 2019" vibe. Not for the first time, while skimming the "newly diagnosed" guide written in 2017, it appears that the ALSA is in its own special time warp.

 

[Nikki J]

It comes from national. Whatever it takes- make ALS a livable disease by 2030. I do think it is a decent long term goal - to make it a chronic disease and there are hints of it happening anecdotally. a few people on tofersen with less aggressive variants of sod1 report being stable for several years. I heard someone say they had been stable for a couple of years on amx0035. for most PALS now this is not going to happen and I think even in the future aggressive forms of the disease are going to be hard to slow down.

I totally agree that highlighting any services they provide locally would be far more appropriate Are they a decent chapter for that? As I have said elsewhere ALSA chapters vary a lot Make ALS a livable disease at some distant point is not as accountable as assists PALS with x y z.

 

[KimT]

Laurie, I'm so glad you brought this up. I have a friend who was dx in October 2021 (bulbar and very aggressive.). She lives in Irving, TX, alone, in an apartment and her doctor convinced her to get vented. Now she can hardly walk, is losing the use of her left hand, and her loaner wheelchair needs a new battery and new wheels.

I've been calling her local ALSA chapter and they won't return my call.

If they want to make it "livable" they can start with helping PALS get their essential needs met. When I was first diagnosed, my niece donated $5,000 to National ALSA. I was furious. She never even asked me. She just sent me a copy of her bank check in a Christmas envelope. I know her intention was good but I would have rather had her do something else with the money. Especially since I had been supplementing her father's income for the past five years.
I guess I'm just irritated because I don't know how to help my friend in Texas. She'll have to go into some kind of facility once she loses mobility. She's only 44. I just want the time she has left at home be less stressful.