No More Excuses ALS Watchdogs!
@als_nowALS advocate fighting for transparency, access to effective therapies, and ensuring ALS patients aren't victims of weak drug pharma gouging. YT: ALSNewsNow
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@iamalsorg
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@MinoShah
@AlsDads
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@AmylyxPharma
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pALS, research the Jason Becker story. A true young guitar virtuoso struck down many years ago. youtube.com/shorts/Mxs_uoM…
Maybe now ALS FOIA requests won't take 8 months (denied with a reply like "you need to prove #ALS and an ADCOM qualify as urgent")- especially when the first one took just 8 DAYS (and was delivered with a smile). Just saying.
I thought real #ALS advocates were focused on (and in favor of) putting existing effective new drugs in bodies, or holding up signs like "for God's sake they're dying, let them try"- not doing media for the latest do nothing blah blah organizations that do no such thing. ALS WTF.
Why, @NINDSfunding? $22 MIL to study the $90/box drug many #ALS patients already bought, tried, and watched fail? You could've just asked. Instead, proven #ALS moonshots #NurOwn, #Reg-T, and even @MayoClinic's own MSC trial (which all show genuine hope) remain defunded. Amazing.
[26 AUG 2024] Sadly, without a transition of how our disease is run into a logical "best hope first", results based model with a focus on "moonshots" while running confirmatory trials on them (while the endless speculative research on rehashed drug combos ride in back), #ALS…
No, you didn't "hear it here first". Thousands of #NME members, patients in the 2 trials, and even Dr. Appel himself said T-REGS halted #ALS in 2018. Imagine the time lost. Yet nothing was done urgently. Don't believe it? Clinics next... youtu.be/G5b91-rESQw?si……
It's day 1 of the 2nd luxury #ALS conference in 8 months. Funny how there were none during Covid yet @Zoom got so much done for #ALS. Not all may, but as a patient I regret how my disease helps fund a $25M payroll by selling snacks and coffee- not pushing for drugs available NOW.
The worst thing for #ALS patients is that with the tax money wasted in 2023 alone the US could have allocated funding for #TRegs and #NurOwn for every patient, and received some form of humanitarian return. Drugs exist now that could help dying Americans. We choose not to act.
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Who to follow
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I AM ALS
@iamalsorg -
Project ALS
@ProjectALSorg -
EverythingALS
@everything_als -
Shah Minokadeh, M.D.
@MinoShah -
ALS TX DAD
@AlsDads -
BrainStorm
@BrainstormCell -
Amylyx
@AmylyxPharma -
Sunny Brous
@sunnystrongals -
Phil Green
@pjgreen -
Brian Wallach
@bsw5020 -
Dr. Nadia Sethi
@nadia_sethi -
ALS Uncensored 🏴☠️
@ScottsFight -
ALS News today
@alsnewstoday -
I’m Dying To Tell You Podcast with Lorri Carey
@LorrisPodcast -
ALS Advocacy
@alsadvocacy
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