Ron Johnson: “This drug [Adalarn] is safe with no deaths reported in two…”

“After 25 day ICU stay, I can independently type on the computer and feed myself. I have personally benefited from Adalurin for 20 years and know dozens of families whose sons have experienced similar stability and resilience. This drug [Adalarn] is safe with no deaths reported in two decades on trial. Yet because of rare disease studies have small cohorts. Traditional statistical thresholds can overlook meaningful improvements. Without FDA approval or continued compassionate use, patients will face rapid decline, loss of essential abilities and preventable sufferings and death.” (01:12–12:46)

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