Contact Maureen McArthur or Mary Margaret Colliver

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For more information including details and directions, patients and families may call (606) 281-4920..

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The meeting will be broadcast to various network sites including the University of Kentucky Chandler Medical Center, Ashland Community College, the Covington campus of Northern Kentucky University, Jefferson Community College in Louisville, Taylor County High School in Campbellsville, and Center for Rural Development in Somerset. The topic will be "Nationwide ALS Awareness."

The support network, sponsored by the UK Chandler Medical Center in conjunction with the ALS Association, provides an educational service to patients with ALS and their families. Meetings are held on the second Sunday of each month.

Edward Kasarskis, M.D., Ph.D., professor, Department of Neurology, UK College of Medicine, Kyle Hahn, chairman and co-founder of The ALS March of Faces, and Grantham also will be available for individual conversations at an event from 6 to 9 p.m. Saturday, June 12, at Joseph-Beth Booksellers at The Mall at Lexington Green in Lexington. "The Faces of Courage Banners" and books that deal with ALS issues also will be displayed.

ALS is a progressive neurodegenerative disorder that produces profound muscle weakness. The weakness eventually is responsible for the death of patients after a two- to four-year course of the disease. Many advances in understanding the cause of ALS have been made over the past seven years. Several clinical trials of experimental therapy are in progress, and a new medication was approved recently for the treatment of ALS.

Many ALS patients and their families desire information about the disease, and in particular, desire information about new developments in treatment. Although some patients are connected to ALS support groups on the Internet, most are not.

Support groups for ALS patients and their families are difficult to sustain in rural areas for several reasons. First, ALS is a rare disease: the prevalence is about five ALS patients per

100,000 persons. Kentucky has about 150 to 200 ALS patients. The critical mass of patients needed to allow a support group to thrive may be present in only a few urban areas. Second, the disease causes profound weakness. Mobility becomes limited with advancing disease. Travel, especially for long distances, is difficult for the patient and family. Even if patients are interested in a support group, they are not able to travel long distances to a meeting in Lexington or Louisville.

The ALS Support Network in Kentucky, through interactive video, serves to meet the educational and informational needs of patients and families and may indirectly provide emotional support for them, although this is not the primary focus.

Using UK’s existing compressed video network linked to other sites via the Kentucky TeleLinking Network, interested ALS patients and families can benefit from a statewide support group that meets monthly.

Kasarskis proposed the novel concept, which is thought to be the only one of its kind in Kentucky and the United States. The statewide support network’s benefits include the formation of a large, sustainable group of laypersons interested in ALS while alleviating the need to travel to Lexington or Louisville. Patients and their families can travel to the nearest network site in order to participate.

Speakers are hosted in Lexington or can participate out of state via interactive video from the Sprint network. Therefore, patients in Kentucky can have direct access to a number of experts from other universities and organizations.