Opinion: ALS groups to the FDA and drug sponsors: ‘We won’t be played again’

Working to improve the fight for therapies for amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) has been like a cruel version of 1950s game show “Beat the Clock,” in which grassroots advocates like me and many others manage to do everything that today’s version of Bud Collyer asks, even those last-minute wrinkles that seem impossible. We jump through hoops and figure out solutions and do it all according to the rules as the clock ticks down. We’ve heard applause from the audience. But we’ve never been given the prize.

We’ve been played.

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