1/ It works. Sadly, good news can also be tragic. How? Starting in 2017 #ALS "leaders" failed (i.e. declined) to rally around (and aggressively FUND) this proven #ALS winner- Dr. Appel's new T-cell therapy that drastically slowed and halted progression: pharmexec.com/view/coya-ther…
2/ instead, @alsassociation and most #ALS organizations chose to rally behind a mega-windfall combi drug which has now blown away in the wind. Fellow pALS I want each of you to know #NME tried SO hard to convince #ALS' "leaders" which path to follow. It appears #ALS chose poorly.
3/ How would I know? #NME advocates (including the wife of one of Appel's #ALS patients who stabilized) met in D.C. with both @FDACBER and @alsassociation, in June of 2019. We BEGGED them to fund or work to expedite this new "REG-T" therapy. You can judge: youtu.be/9693SebHNt4?si…