The ALS Association, Greater Philadelphia Chapter
In 2012 I began my tenure as Chair of the Trustees Board of the Greater Philadelphia Chapter of the ALS Association. ALS’s real name is amyotrohphic lateral sclerosis, but most people know it as Lou Gehrig’s Disease, a progressive, fatal and incurable neuromuscular disease that usually strikes in the prime of life and gradually takes away the ability to move, speak swallow and breathe.
ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries, typically striking men and women between the ages of 35 and 70. My Dad was diagnosed in 1982, at age 51, and battled the disease for 15 years. Over 5,000 Americans are diagnosed with ALS each year. Between 5 and 10% of those cases are familial, occurring more than once within a single family line.
ALS is characterized by a degeneration of motor cells in the brain and spinal cord, leading to muscle weakness and atrophy. In the advanced stages, ALS care can cost up to $250,000 a year. Average life expectancy, without invasive mechanical ventilation, is approximately two to five years from diagnosis. But with advances in research and improved medical care, many are living longer, more productive lives. Half of all affected live at least three years after diagnosis; 20% live five years or more and up to 10% will live more than ten years.
While recent research has shed light on possible causes of ALS, its cure remains a mystery. However recent advances and increased funding for research make this truly a time of hope.
The Greater Philadelphia Chapter is recognized nationally as one of the leading regional medical non-profits, and is honored to be the principal charity of the Philadelphia Phillies. For more information, or to support the fight against ALS, please click the link on my “Professional and Non-Profit Links” menu.