Published online by Cambridge University Press: 17 May 2025
Abstract: Anne became more familiar with Nancy Wexler. Nancy was at risk for Huntington’s because her mother had had it. Wexler was a founding member of the Michigan Chapter of the Committee to Combat Huntington’s Disease. Anne was invited to attend a workshop at the Hereditary Disease Foundation (HDF). The HDF was founded by Nancy’s father, Milton Wexler, a psychoanalyst. In 1981, Nancy invited Anne to Maracaibo, Venezuela, to pursue studies of the families that she had presented two years before at Michigan. Anne would examine the family in which two parents with HD had together birthed 14 children, all of whom were living. Anne had never been out of the country without Jack; she got his approval, but she could tell he was jealous. At the Maracaibo airport, she met the team, such as Steve Uzzell (a photographer), who she’d be working alongside. She knew Ira Shoulson, a neurologist and HD expert; they overlapped for a day. Nancy’s goal was to put together a detailed family tree of all the HD families, take blood and skin samples from each family member and examine each person neurologically and cognitively. The team went to Lagunetas, a remote stilt village to examine the family.
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