week 34: this week i'm gonna... help cure ALS
In the early 1980's, Stephen Kotzin was in his prime - 42 years old, a successful career in commercial real estate, and a great family. His children, Allison and Justin, were 5 and 3 years old, respectively. Life was good.
Stephen started noticing occasional muscle spasms in his foot, and he started experiencing overall muscle weakness. After a few weeks, he decided to visit his doctor. He never imagined the dramatic diagnosis he was about to receive; Stephen had amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, and he was given approximately two to five years to live.
Stephen decided that he would not be limited or defined by his disease, and he would make the most of every moment he had with his children. As the ALS progressed, Stephen would frequently lose his voice - but not his sense of humor; he would simply take to email to express himself. As his physical capabilities decreased and he transitioned from walking with a cane, to a walker, to a scooter, and finally to a wheelchair, he never stopped moving.
Stephen defied the odds and obliterated his doctor's prognosis, living over 20 years with ALS. He got to see his children grow up and remained a consistent force in their lives, always pushing them to succeed. Stephen's positive attitude won him friends wherever he went, including his doctors and the caretakers who helped him at home, many of whom became like family. When Stephen passed away in 2005, he left behind a legacy of perseverance, optimism, and humor, and two children that were extremely proud and grateful for his fight.
Established in 1985, The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
As the preeminent ALS organization, The Association leads the way in research, care services, public education, and public policy - giving help and hope to those facing the disease. The Association’s nationwide network of chapters provides comprehensive patient services and support to the ALS community. The mission of The ALS Association is to lead the fight to treat and cure ALS through global research and nationwide advocacy, while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.
ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. It can strike anyone. In 1939, Lou Gehrig brought national and international attention to the disease when he announced his retirement. Ending the career of one of the most beloved baseball players of all time, the disease is still most closely associated with his name. You can watch Gehrig's famous speech in the video below.
Some facts about ALS:
- ALS is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed, yet in most cases, their minds remain sharp and alert.
- Every day, an average of 15 people are newly diagnosed with ALS - more than 5,600 people per year. As many as 30,000 Americans may currently be affected by ALS. Annually, ALS is responsible for two deaths per 100,000 people.
- The average life expectancy of a person with ALS is two to five years from time of diagnosis. With recent advances in research and improved medical care, many patients are living longer, more productive lives. Half of all those affected live at least three years or more after diagnosis. About 20% live five years or more, and up to 10% will survive more than ten years.
Notes for this week:
- August is Ice Bucket Challenge month! Care to dump some icy-cold water on your head for a good cause? Click here!
- Our collective givetwig donation will provide critical support including equipment loans, assistive technology, ALS Clinics, and more for those living with ALS.
- For further information regarding The ALS Association - DC/MD/VA Chapter, please check out their website.