Jef Akst

Personal Trials Jef Akst

ALS is fatal. There is no cure. There is only one approved treatment, which extends the life span of ALS patients by an average of only three months. But one group of patients took their treatments into their own hands-fighting not just for their lives, but for a disease community that for years has struggled to be heard. Personal Trials is the story of Ben Harris, Rob Tison, and Eric Valor, who joined dozens of other patients in meticulously researching experimental treatments and in dosing themselves with chemical substitutes. All the while, the patients tracked their results openly online-charting thrilling improvements and devastating physical decline-hoping their experiences would enlighten others and advance ALS research. Facing a frustratingly slow and opaque biomedical research system, they believed their most important work was to share their data with the world. As Ben always said, "If it is done in secret, it is done in vain."