Quantified Self Show&Tell

Karen Herzog and Richard Sachs close the night by telling the incredible, moving story of their late daughter Sophia. When Sophia was 10 months old, she was diagnosed with Niemann-Pick Disease, a rare lysosomal storage disease that affects only 8-10 children in the world at any one time. Dedicated to their daughter, and frustrated by the medical and research systems available to them, Karen and Richard bravely built their own model of integrative care. They opened their home to a wide community, kept detailed collaborative records of Sophia in a Binder of Purpose, and even started their own n=1 clinical trial of at their house. The act of documentation enhanced meaning for Sophia's caregivers because her life depended on documenting everything - one small thing that went wrong could mean that she would die.

j vimeo.com/14282114

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