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.

Abstract: Anne went back to Venezuela and Lagunetas in 1982 and annually for all subsequent years until the project stopped in 2002. In 1983, Nancy invited Jack to Venezuela as part of the team of neurologists. He became a key investigator who focused on examining the clinical data collected from the patients. Jim Gusella and his genetics lab at Mass General found a marker that tracked with the HD gene in every affected member of the Venezuelan HD family. The marker was located near the HD gene at the tip of the short arm of human chromosome 4. This discovery was the first time the new strategy for gene mapping – what would become the Human Genome Project – had located a novel gene. Now, that same approach could be used for mapping other diseases and, indeed, the entire human genome. The discovery made the front page of the New York Times, and a news conference took place in the Ether Dome at Mass General. Anne was invited to attend as one of the study neurologists. It was her first visit to Mass General. They hoped the actual gene would be discovered soon. In early April 1985, Anne went without Jack on what started as a typical Lagunetas trip. They survived a huge storm on their way back to Maracaibo, which almost led to a near-death shipwreck.