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No More Excuses ALS Watchdogs! @als_now

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

Joined April 2019
  • Tweets 7,017
  • Following 1,039
  • Followers 3,765
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#Qualsody may be @US_FDA approved, but thanks to a recent change in distribution even fully approved @MedicareGov patients suddenly are not able to receive it. When @biogen changed from Frontier Optum to @AccredoPharmacy availability collapsed overnight. Yet another #ALS failure.
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Good riddance. Too bad some of your previous colleagues didn't choose this option as well. @FDACBER
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#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.
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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.
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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.
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1/ The #ALS "BETTER CARE ACT" is nothing of the sort. #Medicare never fails to pay for my clinic visits. I.E., my visits to doctors. So why push a bill with language that appears to qualify big #ALS "organizations (one gave >$5.5M to its top 13 employees) a new payday? VOTE NO!
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2/ instead of using sneaky language to fund #ALS organizations with $M more in taxpayer cash via #Medicare (as this new bill seems to enable), why not provide #ALS patients with REAL hospital beds (that aren't circa 1967 with a crank on them?) How about ACTUAL "better #ALS care"?
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Get ready for this one. The top 13 ALS ASSOCIATION EXECS were paid $3,991,974 in ONE year...for 37.5 hours per week. This now exceeds 5.5% of total ALSA revenue! All while #NurOwn Ph4 awaits funding. Which would be better for #ALS pALS? RETWEET if you give ASF about #ALS failure!
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2/ Think 5.5% is OK? In contrast, the Tunnels to Towers Foundation executives receive ZERO in salaries. And they're running a much larger organization that builds FREE houses, pays off widows' mortgages, and purchases and renovates apartment buildings for their clients. #ALS_SHAM
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"The foundation of science is having the humility to learn something new, not merely the arrogance of expertise" - Dr. Avi Loeb, Harvard. Perhaps patients should consider whether this quote is the primary reason the wrong new #ALS drug was @US_FDA approved, then failed so fast.
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As if #ALS' failure couldn't get more obvious, the @NobelPrize was just awarded for (drum roll)..... Regulatory T-cells! Dr. Appel completely HALTED #ALS in an @FDA trial nearly a decade ago using them. How ironic and tragic, since patients TOLD YOU SO- in 2019 @alsassociation!
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Congrats to Pediatric cancer on its $50M AI executive order today! Six years ago #ESRD (End Stage Renal Disease) got one too. But in 2019 when #NME advocates, led by @stevens_nation came within inches of an #ALS E.O. the "community" sneered. Now, six years later many #NurOwn....
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2/ patients remain alive, watching their children grow up (including one who led the E.O. charge) after completing the Phase 3 trial and EAP with unmatched survival. In 2019 #ALS leaders questioned a #ALS E.O. But WHY? #ALS COULD also be receiving its benefit by now too! #ALS= 💩
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For those who haven't seen comedian Matt Rife, first of all where have you been, and before you watch this please understand one thing: this is his shtick. Yes, handicapped people attend his shows hoping for this. Now: about that ICE MONEY? We thought the same thing too @mattrife
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Incredible. More #ALS lawsuits, now over drug choices patients never wanted. Thousands of dying patients fought SO hard to pass the exact law that got this @NINDSfunding, and THIS was their reward. $18M SUGAR WATER? Classic #ALS: patients drag the rock up, "experts" kick it back.
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3/ as co-founder of #NMEALS I never believed we would ever NEED to do something like this, and I made an incorrect assumption that #ALS patients would actually be invited to participate in the grant process. I share in the blame for this past assumption and obvious oversight...
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4/ However, I know what I will do next time #ALS orgs ask for help. IMO patients should no longer automatically trust #ALS "leadership", or accept their statements at face value. Sadly, pALS must ask whether others' agendas for #ALS are the same as their own. Verify, THEN trust.
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NOW IS THE TIME for a full case review of #NurOwn for #ALS! @DrMakaryFDA @FDACBER
FDA Biologics@FDACBER
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Step into the forefront of novel endpoint development for rare disease drug development! CBER invites you to submit a proposal to the Rare Disease Endpoint Advancement (RDEA) Pilot Program, a collaboration with @FDA_Drug_Info. Deadline is 9/30/25! bit.ly/48UBUx4
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Why did you delete this thread, @ScienceMat29751? Was it because the NEW @FDACBER's RDEP program specifically mentions EAP data and case reports as a valid way to approve new drugs? Like #NUROWN? Don't like change, or being wrong?
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