Sophia (w/ Richard Sachs)

social life & social media

Karen Herzog

In this talk, Karen Herzog and her husband, Richard Sachs present an incredible story of their late daughter, Sophia. At 10 months old, Sophia was diagnosed with Niemann-Pick Disease, a rare lysosomal storage disease that affects only 8-10 children in the world at any one time. Karen and Richard share 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 clinical trial of at their house.

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