Abstract: By 2001, two years after approval, the new MassGeneral Institute for Neurodegenerative Disease (MIND) building was designed, built and opened. About 30 independent faculty laboratory heads occupied the laboratory floors. Each lab head had 5–15 people in their lab and in total about 300 people worked on the two main floors. Anne’s lab and office moved to MIND. Early on, she was still very depressed about Jack’s death and needed help to continue her research. Without Jack, Anne didn’t have enthusiasm or ambition. Zane Hollingsworth and Anne’s previous trainees, Jang-Ho Cha and David Standaert, helped Anne with her students, postdocs, technicians and grants. Anne was elected president of the American Neurological Association and then president of the Society for Neuroscience. Six years after Jack died, Anne received an email from her old eighth-grade and sometimes high school boyfriend, Stetson Ames. He was coming to Boston in May and asked Anne if she would like to meet. She and Stets eventually married. Anne inherited $2 million when her mother died, a million of which she donated to Mass General. Nancy Wexler began showing signs of Huntington’s disease. It was undeniable, but neither Anne nor Nancy could face the devastating possibility.

Abstract: Anne’s first years at Mass General were very exciting scientifically. Faculty members Rudy Tanzi, Jim Gusella and their collaborators found the gene for one form of Alzheimer’s disease and Robert Brown found another gene for one form of amyotrophic lateral sclerosis (ALS). Finally, ten years after finding the marker, the project paid off. At the end of February 1993, Marcy MacDonald and Jim Gusella told Nancy and Anne that they had found the actual mutation in the gene for Huntington’s disease. Now they knew that the HD gene mutation was composed of an abnormal number of repeated sequences in the DNA, which was keeping with what other research scientists had already found to be the cause of several other neurologic diseases. The identification of the gene mutation allowed for many new experiments to be done. The identification of the gene mutation also made possible a simple blood test that allowed people to determine whether they had inherited HD. At first, there was some enthusiasm for getting tested. However, it soon became clear by the relative few who signed up for the test that many people would rather live with ambiguity than know they would definitely develop a deadly, incurable disease sometime in the future.

Anne Young, a neurologist at Harvard and Mass General, experiences a traumatic life change when her husband, a neurologist and collaborator in her field, returns from a week of neuroscience meetings in Aspen, Colorado, complaining of pain in his throat and dies suddenly in his sleep from a heart attack. Anne tries to be strong for her daughters, Jessie and Ellen. She gains comfort from friends in her field and family, who give her the strength to cope. Most of all, Anne is comforted by Nancy Wexler, a dear friend who is like a second mother to her daughters. Having Nancy by her side lightens the burden and impossibility of caring for herself and her daughters while experiencing an unbearable loss. Nancy accompanies Anne to the Ether Dome for Neurology Grand Rounds for a presentation on organ donation. It is an opportunity for Anne to thank her colleagues and friends during this terrible time and tell them how she donated as many of Jack’s organs as she could for research. The courageous steps she takes to express herself are cathartic, yet, in times of desperation and loneliness, she doesn’t know how her future will unfold.

Abstract: As department chief, Anne had to work with the hospital’s highest echelons. She learned a lot about leadership styles. Anne’s department had about 200 faculty. She was in charge of all but about 10 people. Anne started to build the subspecialty neurology services according to a model she had presented to the search committee. She helped promote the basic scientists and recruited several clinician scientists to link the researchers to the clinicians. The Mass General had made important contributions to the understanding of stroke. Adding two postdoctoral fellows to work with the team full time gave the team the manpower to see more patients and help run clinical trials. This small amount of added support allowed the Stroke Service to thrive. Similarly, Anne tried to enhance the Epilepsy Service, Behavioral Neurology Service, and Movement and Memory Disorders Service. One big disappointment for Anne and Jack was that they were not particularly welcome in the Mass General Huntington’s outpatient clinic. A diverse group of Mass General doctors saw the HD patients and the clinic provided nutritional, physical and occupational therapy advice for each patient. Anne and Jack could have joined the group whether they liked it or not but decided to just see their own HD patients.

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.