ALS disease needs more awareness, research



First published: Saturday, September 23, 2006

I'd like to commend everyone who worked so hard to help raise $173,000 in two recent golf outings to provide services at St. Peter's ALS Regional Center for people with amyotrophic lateral sclerosis, often called "Lou Gehrig's disease."
I bring this up not only because of my own personal involvement but because I feel there needs to be more awareness raised about the disease, the benefits of stem cell research, and the services that the center provides at no cost to patients and families.

At our event, a longtime family friend with the disease told the crowd how he had lost confidence in the medical community because he had been misdiagnosed for nearly three years. Once properly diagnosed and placed in compassionate care of the ALS Regional Center, he regained that faith.

ALS is not a disease that gets a lot of attention. But for the people who have it, and for the family and friends who are caregivers, ALS has their attention immediately. The sooner a family is directed to services, the sooner they will feel the hope and compassion of a caring staff, supportive counseling, expensive medical equipment, and the informational connection one so desperately needs.

For our family, the ALS center served as a lifeboat in 1989, when our dad was diagnosed. We now sponsor the ALS Memorial Open to honor my dad and James Michaels, who both died of ALS, a degenerative neuromuscular disease. The time and money donated by other family members is testimony to the gratitude they feel for the center's services in their time of need.

These free services and necessary medical equipment, (usually donated back from former patients), require adequate funding, staffing and handicap-accessible space. Because the center does not receive money from the government or insurers, fundraisers such as our outing, Siro's Scramble and others, as well as the hospital foundation, are its major sources of income. If you would like more information about ALS, or ways to help, please contact the center (525-1629) or St. Peter's Hospital Foundation (482-4433).

SCOTT DALY

Co-chair

John C. Daly-James W. Michaels

ALS Memorial Open, Albany

http://www.timesunion.com/AspStories...date=9/23/2006