No More Excuses ALS Watchdogs!

#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.

@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.

Today, President Trump shared a first look at the 2027 budget, and it could negatively impact ALS research. We are concerned and will thoroughly review the full budget proposal when it is released later this month. The initial plan includes a $5 billion cut to the National Institutes of Health (NIH), which is the main source of federal funding for ALS research. NIH helps support science, clinical trials, and important data needed to find new treatments. The ALS Association will keep fighting for more funding for ALS research to make ALS livable and cure it. #ALSAdvocacy #FundALSResearch #UnitedforCures #curescantwait

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

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.

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.

#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.

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"?

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!

@biospace @FDACBER @statnews @DrMakaryFDA @alsassociation @ALSCanada @alsncchapter @ALSTDI @iamalsorg @ALSAction 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

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!

"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.

@SenMullin PLEASE ask Morgan about the crucial #ALS issue we emailed her about recently regarding #ALS! Your 2022 testimony to the #FDA was crucial in passing the #AACTforALS law and this is something eveb better but time is absolutely of the essence once again! Thank you!

@zoox @zoox When is your handicap version with dual automatic ramps coming out? It's a massive untappped market and wouldn't take much engineering to add a slide out ramp to one or both sides under the already low door sills. Ping me for a consult.

The inside story on designing, building, and testing Zoox. Chris Stoffel, Director of Studio Engineering, and Andy Piper, VP of Vehicle Development, explain why we took the hard road of building our vehicle from the ground up. Watch in full: bit.ly/37Bv3MR #ThisIsZoox

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!

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= 💩

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....

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

@ScienceMat29751 @NINDSfunding @DrMakaryFDA @FDACBER @NIH @SecKennedy @FDA @statnews @biospace @alsassociation @mndassoc @ALSforums One company's drug was @FDA approved, overpriced, sold, removed, and has an active lawsuit. #BCLI's sure looks like lawfare. And your best response to #ALS patients getting screwed is an incredibly weak segue? All from a "transparent" anonymous account, no less. Lemme guess: PhD?

@als_now @NINDSfunding @DrMakaryFDA @FDACBER @NIH @SecKennedy @FDA @statnews @biospace @alsassociation @mndassoc @ALSforums In the spirit of transparency, it appears confirm that Brainstorm is being sued for exaggerated claims. news.bloomberglaw.com/securities-law…

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.

@NINDSfunding @DrMakaryFDA @FDACBER @NIH @SecKennedy @FDA @statnews @biospace @alsassociation @mndassoc @ALSforums 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.

@NINDSfunding @DrMakaryFDA @FDACBER @NIH @SecKennedy @FDA @statnews @biospace @alsassociation @mndassoc @ALSforums 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...