No More Excuses ALS Watchdogs!

ALS advocate fighting for transparency, access to effective therapies, and ensuring ALS patients aren't victims of weak drug pharma gouging. YT: ALSNewsNow

[No More Excuses ALS Watchdogs! @als_now]

@alsassociation Brooke Eby’s tragedy highlights terminal patients' reality of modern medicine: a regulatory framework that prioritizes statistical perfection over time. Brooke stood before one #FDA Committee and said, "with #NurOwn the risk is minimal. With ALS the risk is inevitable."

[No More Excuses ALS Watchdogs! @als_now]

Brooke Eby’s tragedy highlights terminal patients' reality of modern medicine: a regulatory framework that prioritizes statistical perfection over time. Brooke stood before one #FDA Committee and said, "with #NurOwn the risk is minimal. With #ALS the risk is inevitable." Facts.

[No More Excuses ALS Watchdogs! @als_now]

YGTBFKM. When patients "disrupted" #ALS (fighting for REAL HOPE (not blend$ of Cipro or supplement$), it was: 1) "divisive" 2) "angry" 3) "counterproductive", etc. Now, some PhD who supported #Relyvrio but hates #NurOwn wants to "disrupt" #ALS? Yep, #ALS hope is FUBAR. 🤪🤡😜

[No More Excuses ALS Watchdogs! @als_now]

@MinoShah @ChrisJohnson28 @RealEricDane From 2019-2023, #ALS "experts" say: "You can't approve new drugs with only 2 trials. That's not good science!" Result: The worst drug (ever) receives #FDA approval thanks to a letter signed by 25 experts. But look at what they said about a drug that actually WORKED for some:

[No More Excuses ALS Watchdogs! @als_now]

I know a few. https://t.co/8KZsaLABC9

[No More Excuses ALS Watchdogs! @als_now]

@nicksortor Cool. I got SPIRIT21 comms on the way home, over TUL/FSM on their PRI freq.

[No More Excuses ALS Watchdogs! @als_now]

@FDACBER Too little too late for @ALS. Thanks for nothing, signed the 29,699 #ALS patients still with no real hope.

[No More Excuses ALS Watchdogs! @als_now]

@alsassociation How about just keeping PAYROLL under $25 MIL? Every summer the "New Ice Bucket!" won't even cover payroll. #ALS merely waits for another generation of patients then reboots the ATM, "historically using 45-55% of functional expenses for payroll?" Aka, "$37 to $45M"? ⬇️ Gross. 🤢🤮

[No More Excuses ALS Watchdogs! @als_now]

@alsassociation No they aren't. This time they know nothing real happened for #ALS hope 10 years ago, and your payroll alone last year was over $20 MILLION?

[No More Excuses ALS Watchdogs! @als_now]

@BrownLN11 @adamfeuerstein New term: BDS. The real ALS problem: "if its too late for me then nobody gets it."

[No More Excuses ALS Watchdogs! @als_now]

@adamfeuerstein STFU. Real men watch cycling, not dudes who flop around on the ground when they trip, or a game that ends 1-0 after wasting 90 minutes of your life then ends in a riot. Then again, that would explain a lot. Too busy making markets and destroying hope for @LeTour?

[No More Excuses ALS Watchdogs! @als_now]

@Cream43560 @alsassociation Please avoid facts here. This is ALSA. They want to sign up Chris to "advocate" for them. And they probably will, like they (almost) always do. That is, except for independent NFL warriors ike @stevens_nation, who received drugs that WORKED which ALSA refused to support.

[No More Excuses ALS Watchdogs! @als_now]

What a tragedy. The #ALS "community" had HALTED PROGRESSION with T-REGS and/or #NurOwn by 2016. IMO Dr. Appel is too gracious to say "I got screwed". "No money" for urgent trials. As we say, "#ALS can't find its own ass with both hands". Major incompetence at the top. Admit YET?

[No More Excuses ALS Watchdogs! @als_now]

@cryptojourneyrs Hopefully she didn't make amateur mistake #1 and sell it all at the bottom. Its not "gone" until you hit the sell button. Signed, 2020. HOLD! HOLD!

[No More Excuses ALS Watchdogs! @als_now]

@alsassociation So, only drugs from mega-pharma giants that fail Phase 3 (but "sponsor" #ALSA and pay for expensive luxury "conferences") can apparently "restore lost function". Others, which might help 98% of patients protested @FDA to try for years can't. Seems legit: https://t.co/xw3wnI6YrI

[No More Excuses ALS Watchdogs! @als_now]

@alsassociation Levi should ask you WHY he was denied access to the drug that did all of this: https://t.co/hO7lD4s4ZE.
ALS patients really were RIGHT in 2019, Levi. I'm so sorry you haven't been shown why you have no options in 2026. The FB group "No More Excuses ALS Watchdogs" has it for you.

[No More Excuses ALS Watchdogs! @als_now]

@alsassociation Meanwhile your CEO has made about $2M in 8 years, and Ice Bucket funds were hoarded.

Until wasteful trials funded by government money (like sugar water injections and Ibudilast) stop receiving tens of million$ (while drugs that WORK get nothing)....can you blame them? I can't.

[No More Excuses ALS Watchdogs! @als_now]

Good riddance. Too bad some of your previous colleagues didn't choose this option as well. @FDACBER

[No More Excuses ALS Watchdogs! @als_now]

3/ See, #ALS' failures aren't about those who overperform at a fair wage. This is about exactly the opposite. It's about a long lost of people (very long) who for years have quietly taken their little six figure cut- and get MAD when you dare challenge their actual results.

[No More Excuses ALS Watchdogs! @als_now]

#ALS needs less organizations handing out six figures salaries, and access to new drugs that WORK. Until those who secretly command *your* disease are willing to leave and (I hate to say it) every new patient learns this, #ALS cannot be fixed. It will only make more millionaires.

[No More Excuses ALS Watchdogs! @als_now]

2/ pALS, a "club" exists at the top of #ALS and a LOT of people want in. The goal is to quietly become eligible to withdraw 100, 200, or even $500k+ a year from #ALS' misery. Or in reality, from your misery. Might things be different if #ALS was winning? Sure! But it's not.