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 many 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.
Founder ALS Foundation for Life
Just before turning 27, Frank Carlson had his whole life ahead of him. His career was on its way, he shared an apartment with a friend, bought his first brand new car. He had a loving family and friends, quite the active social life, and had met that someone special. He was excited to have become an uncle and was looking forward to the day he would be married and have his own child. Things were looking good.
Then Frankie started experiencing some symptoms of vertigo, and he started tripping without any apparent reason. After being treated for minor infections and later going through a battery of testing for more serious illnesses, Frankie was diagnosed with Amyotrophic Lateral Sclerosis in March of 2001, just before his 28th birthday.
After the initial shock wore off, it was time to make some decisions and deal with this unexpected new life - one of an ALS victim. There were many family discussions and decisions made, but perhaps the most important one was made by Frankie rather quickly. Frankie had a passion for life and was determined to continue to live as active and normal a life as he possibly could. ALS was not going to take away his spirit.
During the next two years, the changes in his abilities, and therefore his care, were constant. He was shocked by the physical, emotional, and financial burdens that accompany this disease. Frankie was very grateful that he had a close network of family and friends who were able to assist both financially and physically with many of the home modifications and assistive equipment he needed.
While personally battling this disease each day, Frankie spent much of his time on the computer, researching ALS and available resources ... reading all he could find about the disease. He considered himself lucky in many ways, and thought about other pALS who might not be as fortunate as he. He decided that he wanted to invest his time and energy trying to find a way to help improve the quality of life for other ALS victims. He started the ALS Foundation for Life, a non-profit organization created and operated solely by volunteers. The mission of his foundation was to aid pALS and their families who need financial assistance, by providing grants for home modifications, medical equipment, and supplies not covered by insurance to help maintain a sense of independence and dignity. In a speech Frankie wrote shortly before he died (read by his caretaker at a foundation fundraiser), he said “As my symptoms increased in severity, I began to realize that I am fortunate. When I could not get up the stairs to get into my bedroom, my family installed a chairlift. When I lost the ability to walk and became confined to a wheelchair, my family was able to build a ramp for me to get in and out of my home. When I lost use of my hands, I was able to use a computer with special equipment.” He knew how important these things were.
Frankie was able to realize some of his dreams. He continued to experience and enjoy life; he had goals; his foundation was formed. He was married and experienced the joy of the birth of a daughter. A few short months after the birth of his daughter, Frankie lost his battle with ALS on July 2, 2004. His memory, selflessness and mission remain alive through the ALS Foundation for Life.