More commonly referred to as Lou Gehrig's Disease or ALS, Amyotrophic Lateral Sclerosis is a fatal neurological disorder that affects thousands of Americans each year, causing paralysis through the progressive death of motor neurons. Thirty thousand Americans have ALS, and 250,000 Americans alive today will eventually die from the disease. Although ALS mainly affects patients over fifty, it can strike at any age. It also strikes without warning - nine out of ten patients have no family history of the disease. Most patients die within four years of diagnosis. There currently is no known cure. Having been diagnosed with Amyotrophic Lateral Sclerosis in March of 2001, I am acutely aware of the physical, emotional, and financial burdens that accompany this disease. I have struggled with the losses of such mundane abilities as walking, lifting my arms, and signing my own name. I have stressed myself in accepting the harsh realities of battling a chronic, progressive, and terminal illness. I feel the strain of the fiscal responsibilities bestowed upon my loved ones and myself as we try to keep ahead of the ever-changing degeneration and maintain a healthy quality of life. ALS takes enough of a physical and emotional toll on the individuals bearing this debility that the finances required in preserving a wholesome quality of life should be of little or no concern. Social Security alone is hardly sufficient in the coverage of daily living expenditures and is inadequate in repelling the accruement of expenses. Between medical costs, home modifications, and assistive technology the average patient will be required to spend amounts in excess of $200,000. How can one be expected to do this alone?
I am fortunate. I have been blessed with a tight network of family and friends who have made my life livable. They have helped me in every way from finding assistive devices and technologies, intrinsic in keeping a sense of independence, to modifying my home to suit a handicapped lifestyle. I am, however, in the minority and have discovered that most ALS patients lack a support network and are taking on this arduous challenge alone.
Most other organizations, alongside the government and medical professionals, are focusing the majority of their diligent efforts on finding a cure and prevention for Lou Gehrig's disease. It is the responsibility of the public to offer our assistance in the interim. It is the mission of the ALS Foundation for Life to improve the quality of life for those with Amyotrophic Lateral Sclerosis in our community. We realize that it is difficult to know what to do or where to turn as symptoms develop. The progress occurs without warning and patients are often caught unprepared to manage new adjustments. With your support we can increase public awareness and aid in providing assistive equipment, technology, and financial aid for medical expenses and home modifications, as well as serve as a guide in finding and acquiring these products and services. Thank you,
Frank Carlson Founder ALS Foundation for Life
ALS Foundation for Life PO Box 96 Natick, MA 01760
