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Chapter 1: The Dancing Disease
Pages 1-16

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From page 2... ... It's hard work, untangling family relationships, testing for symptoms, and working with the villagers whose blood and cooperation are critical tools for finding the cure. Nancy grieves when villagers become ill with Huntington's, because she knows how deeply they are suffering. Read the entire page →
From page 3... ... Huntington's isalways on her mind. It may even be in hergenes. Read the entire page →
From page 4... ... "I'm proud of you." The blond woman is Nancy Wexler, an American scientist, and right this minute she is hard at work on a research project that may eventually save thousands of lives. Maybe even her own. Read the entire page →
From page 5... ... Nancy emerges from the crowd, rounding the corner of the building, followed by children, her arms around the ones pressing close to her. At the side of the building, a young doctor is examining a short, husky man. Read the entire page →
From page 6... ... (Some other genetic diseases, like cystic fibrosis, are "recessive," meaning the child needs to inherit abnormal genes from both parents in order to show symptoms.) Each child in a family whose mother or father has HD has exactly the same one-in-two (or 50 percent) Read the entire page →
From page 7... ... The uncontrollable movements are often described as "dancelike." When Nancy lectures on HD, she often explains the abnormal movements this way: "Seeing people with Huntington's is like watching a giant puppet show. Their limbs are jerked around as if by an unseen puppeteer, and there is nothing they can do about it." These movements only stop when the person is asleep. Read the entire page →
From page 8... ... "It was very dramatic," she told her friend and colleague Judy Lorimer when she got back to her lab in New York. "All the trees had been cut down so as not to block escape roads. Read the entire page →
From page 9... ... "My Spanish didn't get very far. But luckily, we worked with a great scientific team from Palma." HUNTER And in tiny villages in the mountains of Peru, many miles outside Lima, the team kept getting flat tires with no replacements GENE available. Read the entire page →
From page 10... ... . de El Bucaramanga Guri Arauca El Jobal Dorado La Paragua Rio Cuyuni Puerto Canaima Peters Mine Carreno Rio Guyana V e n e z u e l a Car Paz de Issano Tunja Rio Rio oni Meta San Juan Rio Puerto de Manapiare Ayacucho Caura Santa Elena Orind North America de Uairen San Fernando de Atabapo Normandia Vila Brasil C o l o m b i a Puerto re Guavia Inirida Bonfim Esmeralda Rio Uraricoera Rio Boa Vista South America e Rio P a c i f i c San Jose del RioGuainia Orinoco Guaviare Casiquiar O c e a n Atlantic Rio Calamar Ocean Branco Novo Cucui Rio Paraiso Sao Gabriel da Cachoeira Rio Negro Represa Balbina B r a z i l today by the people in the village will travel by plane tomorrow to a lab at Harvard University in Boston, where a scientist named Jim Gusella and his collaborators will analyze them, looking for clues that may lead them to the HD gene. Read the entire page →
From page 11... ... She's mostly flying up and down the halls, her pale blond hair floating behind her, as she drops in to visit people in other offices -- particularly her collaborators, Judy Lorimer and Julie Porter, plus scientists who work nearby. Judy is project director and Julie is data chief for the Venezuela project. Read the entire page →
From page 12... ... You can figure out what a neuropsychologist does by taking apart the word. The prefix neuro comes from the Greek word neuron, which means "nerve." You probably know that psychologists study human behavior and the workings of the human mind. Read the entire page →
From page 13... ... The evidence from Venezuela fills the filing cabinets in Nancy's office. The papers in these cabinets contain data on genes, blood, disease symptoms, and family relationships of thousands of Venezuelan villagers. Read the entire page →
From page 14... ... Alice has also published a riveting memoir of the Wexler family and the origins of the Hereditary Disease Foundation. The book, Mapping Fate: A Memoir of Family, Risk, and Genetic Research, also describes the quest for the HD gene. Read the entire page →
From page 15... ... While she's in Los Angeles, Nancy stays famous architect at her father's apartment. She's a successful professional woman but Frank Gehry helped still enjoys being a daughter living with a parent -- at least some of design Nancy's apartment, her home the time. Read the entire page →
From page 16... ... After dinner Nancy will leave Nancy Wexler believe that even the most her papers unread and they'll go to the movies -- one or two or dedicated scientists three to make up for lost time. Nancy dashes down the hall to ask deserve an occasional Judy and Julie to recommend some good movies. Read the entire page →

From page 2...

... It's hard work, untangling family relationships, testing for symptoms, and working with the villagers whose blood and cooperation are critical tools for finding the cure. Nancy grieves when villagers become ill with Huntington's, because she knows how deeply they are suffering.

Chapter 1: The Dancing Disease Pages 1-16

Chapter 1: The Dancing Disease
Pages 1-16