Eight years ago there was a big meeting at the FDA dedicated to ALS. Organizations were there with bells on. Individual advocates (including me) gave our opinions. Industry chimed in. Researchers spoke. FDA listened.
https://www.federalregister.gov/documents/2013/01/31/2013-02088/considerations-regarding-food-and-drug-administration-review-and-regulation-of-drugs-for-the1/
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More was said than done. Every clue for better, faster therapy development today was presented on Feb 25, 2013. As in any meeting, unless you spell out action items and responsibilities, it's just a meeting. 2/

Besides the great human tragedy, the constant loss of people with ALS causes a problem w/ accountability. We have feel-good meetings, but memories in this fight are relatively short. W/o specific, documented commitments, good intentions are not turned into action. 3/

“Those who cannot remember the past are condemned to repeat it." (George Santayana-1905). 4/end