Showing 1 - 1 of 1 annotations associated with Wexler, Alice
Last Updated: May-10-2004
- Holmes, Martha Stoddard
Summary:This story of one exceptionally accomplished family's discovery of their past and future relationships with Huntington's Disease (HD) is also the story of how the Wexler family changed the cultural narrative of HD for other families at risk for this genetically-transmitted and currently incurable disease. The HD diagnosis of Leonore Wexler (the author's mother) inspires Milton Wexler, a psychologist, to create a major foundation for HD research, which develops critical mass and influence as Leonore Wexler's condition deteriorates, and after her death. The book interweaves the story of the Wexlers' emotional and other negotiations with HD and the story of their efforts to create an HD community comprised of those with active symptoms of HD, family members, advocates, and researchers.