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posted: 2/19/2013 1:49 PM

Author Alice Wexler to speak at Huntington's Disease conference

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Submitted by Dave Hodgson, Illinois chapter-Huntington’s Disease Society of America

Alice Wexler, author of "Mapping Fate: A Memoir of Family, Risk, and Genetic Research" (University of California Press), and a noted expert on the devastating neurological illness called Huntington's disease, will keynote the ninth annual state conference sponsored by the Illinois chapter of the Huntington's Disease Society of America.

She will talk on the subject, "HD Stories: How Testimony and Storytelling Can Change Our Lives."

The conference is from 8 a.m.--3:15 p.m., March 9, at the Hilton Chicago Northbrook Hotel, 2855 N. Milwaukee Ave., Northbrook.

A noted historian at UCLA's Center for the Study of Women, Wexler is also author of "The Woman Who Walked Into the Sea: Huntington's and the Making of a Genetic Disease," (Yale University Press), which won a 2009 American Medical Writers Association Medical Book Award. Wexler comes from a distinguished family. Her mother, a geneticist, died of Huntington's disease; her sister Nancy is a groundbreaking researcher and professor of neuropsychology at Columbia University; and her father, the late Milton Wexler, was a psychoanalyst and Hollywood screenwriter who co-founded HDSA in 1967.

Other conference speakers include Dr. Kathleen Shannon, professor at Rush University Medical Center and director of the Huntington's Disease Center of Excellence at Rush, and Cori Robin, LCSW, a Chicago-based family therapist associated with the Center of Excellence and HDSA's Illinois chapter. Breakout sessions during the day will address topics such as estate planning for HD families, how to tell your children about HD, the pros and cons of predictive genetic testing, and HD and nutrition. Activities for children ages 6 and up will be provided, including an art workshop.

Huntington's disease is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral, and physical control, and for which presently there is no cure. Huntington's slowly diminishes the affected individual's ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30-50 years of age and progress over a 10-25 year period. More than 30,000 people in the United States are currently diagnosed with Huntington's.

For information on the 2013 HDSA Illinois State Conference, contact Daniel Born, conference chair, at (773) 896-4327 or email For those who preregister by March 5 (go to the conference, including continental breakfast and buffet lunch, is free. Registration at the door is $10 per person. Funding for the conference is generously provided by Lundbeck Inc.