AFTD to Convene Families Affected by Rare Brain Disease

WHITE PLAINS, N.Y., Feb. 20, 2014 /PRNewswire-USNewswire/ -- In the spring of 2009, 57-year-old Anne Geremia of Princeton Junction, NJ, began to struggle with her responsibilities as a teacher. She had trouble planning her days, she was confused, she couldn't get to meetings on time. Then came the mini-breakdown, and she was asked to take a temporary leave of absence for the remainder of the school year. Anne saw several doctors during this time, but the problems remained, and they had no definitive answers or diagnosis. She returned to work in the fall, only to find within the first week that she couldn't function.

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"My wife, who had been an outgoing, fun-loving woman who enjoyed challenging herself, became overwhelmed with the simplest of tasks, was rather apathetic most of the time and struggled to speak and convey her thoughts," said Anne's husband, Jim. "I took her to specialists in Pennsylvania who gave her a diagnosis of dementia and possibly one called corticobasal degeneration," he recalled. 

No longer able to work, Anne applied for and received full-time disability. Two years later, the initial diagnosis was confirmed by a neurologist in New York City. Jim and Anne learned that she had a progressive degenerative brain disease called frontotemporal degeneration that has no real treatment…and no cure.

Frontotemporal degeneration, or FTD, is a disease process that affects the frontal and temporal lobes of the brain.  It causes a group of brain disorders that are characterized by changes in behavior and personality, language and/or motor skills and an inevitable deterioration in a person's ability to function.  FTD is often diagnosed in the mid- to late-50s, when a person is actively parenting and nearing the height of his or her career.

The Association for Frontotemporal Degeneration (AFTD), a national nonprofit based in Philadelphia, will hold its 2014 Education Conference and Annual Meeting at the Crowne Plaza in White Plains on Friday, March 14. The conference begins at 10 a.m. and concludes at 6 p.m. with a social reception to follow. The presenting sponsor for the conference is TauRx.

Dr. Edward Huey, assistant professor in the departments of psychiatry and neurology at Columbia University, will give an overview of FTD as well as speak about trends and development in the field of FTD research. Robert Bazell, former NBC Chief Science and Medical Correspondent, will give the keynote address.

The education conference features a unique, interactive program, focused on the issues and challenges that may arise at different stages of FTD. Attendees may choose between the following afternoon breakout sessions: newly diagnosed (for caregivers), coping with language changes, coping with behavior changes, comfort care and end of life considerations, and making a life after being diagnosed (for those with FTD). 

Registration for the conference is available online at www.theaftd.org. The cost for professionals is $50; family caregivers and those affected with FTD may attend at no charge. 

SOURCE Association for Frontotemporal Degeneration

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