Top Tweets for #NMEALS
Happy to respond. First, slow progressing #ALS patients have seen numerous similar claims before. In fact, another one claiming to potentially "cure" #ALS exists right now as well. See below.
Next, #NMEALS has always said #ALS is two different issues at different times. Slowing or halting #ALS is the most logical first step, and this target HAS already been achieved in some pALS. While it's nice to hear a few experts finally publicly acknowledge this important target, what they refuse to say is that it has already been done in multiple @US_FDA approved trials. Why?
The last AUS π¦πΊ drug for #ALS claimed to slow #ALS by 70% but seems to be stalled. Let's wait and see what happens here too.
Last, even IF this drug really can regenerate neurons the @US_FDA will still require a full Phase 2 trial, plus (after #Relyvrio) a Phase 3 trial of some kind most likely as well- unless the results are absolutely beyond undeniable. Sadly the current #ALS system means most patients alive today are likely 3-6 years away from accessing this new therapy- even IF it's a genuine home run. That's why:
This is a problem #NMEALS knew and understood well years ago, and why it was so critical to approve all truly effective and safe "gap" therapies (like #TRegs or #NurOwn) even if only "some" did well- so that as many pALS as possible would have their shot at living to see better options arrive. That is, IF they arrive.
Make sense? It all seems so simple when your life depends on it, but not so much when it doesn't and #ALS is just a job. At least we're not wasting billions of dollars on endless foreign wars instead of helping young mothers and fathers and decent Americans dying from this nightmare disease.
I hope this enlightens just one of #ALS' healthy hope haters to wake up, or can help educate newly diagnosed #ALS patients unsure of what's so wrong in #ALS to better understand why #NMEALS members are so adamant about certain effective #ALS treatments (which have clearly helped "some"), and why they should already be in bodies by now. #ENDALS
Amazing weekend, amazing man, amazing car. The next and most crucial battle for #NMEALS begins soon. As always, with Craig in mind.
https://t.co/EYQ9vlXnzP
2/2 It was 18 months between the end of the trial and EAP (and 7 months since)- but you kept telling your story. Ultimately Roberto ran out of time waiting on one @FDACBER decision. Tragic. See you on the other side #ALS hero. #NMEALS @alsassociation #NUROWNWORKS @adamfeuerstein
4 years ago #NMEALS ran to the head of the line, meeting with and begging @FDACBER & @alsassociation to support the top two hopes for current pALS. We also said the same for T-Regs, yet both remain underfunded (or harrassed) as #ALS payrolls soar. What *could* #ALS have looked like in 2023 if only....?? #toolateformany #F_BY_2030
Here is this week's most-read article on our #ALSNewsToday website! Are you caught up? https://t.co/WR546gi5TN
A new analysis of early-2000s trials revealed stem cell transplants can extend the survival of #ALS patients by up to four years.
#amyotrophiclateralsclerosis
@alsassociation @statnews @biospace @MuscleAndNerve #NUROWNWORKS Excuses, excuses, excuses. No More Excuses! #NMEALS
@alsassociation @BrainstormCell @US_FDA The BrainStorm phase 3 data is published in Muscle & Nerve. Iβm sure all the data was sent to them. Most public companies would not share unblinded raw data! Are you stating that @biogen shared all their raw data with you? Please clarify.
Wanna learn something brave, heroic, and hard core? This incredible human being attended NME's May 2020 bodybag protest in DC- and literally signed his own headstone in protest of being denied #NurOwnworks. He died waiting. This π© is getting old @US_FDA @biospace #endals #NMEALS
I feel as though I'm in the front line of this #ALS army & I'm just waiting to be mowed by this disease while the @US_FDA refuses to send in the cavalry. We have lost so many these past few months on the front line. Today we lost another. RIP @MMoutsoulas . Gone too soon! #EndALS
@ShereeWLWT @WLWT Thank you for supporting the #ALS #dyingwaiting #NUROWNWORKS community. Shared on #NMEALS!
Nice TV story up now featuring @ThurmanTough and @als_now about AMX0035 and NurOwn. Thank you to @WOWKTV13 for your continued support of #ENDALS. #NMEALS #AMX0035 #NUROWNWORKS @FDA @BrainstormCell @AmylyxPharma @biospace #DRUGSINBODIES #FDA https://t.co/EL3Lv29Jtl
Great news from @biospace @BrainstormCell #ALS #NMEALS #MOVINGFORWARD #BLATIME #ALSA https://t.co/13iCfXqQXW
Nice story @25NewsKXXV about #NMEALS co-founder and @AggieFootball fan @CraigReagan2. Next, stay tuned for another one about this early #NurOwn advocate's righteous journey. Craig protested to #ENDALS before it was cool and is the #NurOwnOG @BrainstormCell
https://t.co/hlu2hKrJGA
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