Between July 29 and Aug. 29, the ALS Ice Bucket Challenge has raised $100.9 million for research in the causes and treatment of amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. During the same period last year, only $2.8 million was raised.
ALS was discovered in 1869 by a French neurologist named Jean-Martin Charcot. In the United States, it gained attention in 1939, following the diagnosis and subsequent retirement of Yankees player, Lou Gehrig. The disease affects nerve cells in the brain and spine, causing the muscles of its victim to become useless over time. Around 20 percent that are diagnosed live five years or more, and the likelihood of living longer decreases in percentage. It is estimated that 30,000 Americans could have the disease at any given time. There are roughly 5,600 people diagnosed yearly, or 15 new cases per day, in the United States.
In 2011, the ALS Association discovered a genetic abnormality that is the most common cause of ALS. ALSA also discovered two genes that are responsible for up to 25 percent cases of inherited ALS. So far, the only medication approved by FDA, the Food Drug and Administration, is Riluzole, which is shown to increase the life of a patient by approximately three months.
ALSA also promotes awareness of the disease in the White House and federal agencies, such as the National Institutes of Health, Centers for Medicare and Medicaid Services, the FDA and Centers for Disease Control and Prevention. Through their advocacy efforts, ALSA has gathered over $365 million for research in the last 10 years. Because of their efforts, in 2008, the ALS Registry Act was passed. It allows for the identification of cases across the country for research purposes.
The Georgia Chapter of ALSA holds events year round to raise funds for ALS research. These can be anything from golf tournaments to auctions. The biggest fundraiser is the Walk to Defeat ALS, which takes place yearly. This year the event happened on Sept. 13. The goal was to raise $575,000. As of Sept. 7, they gathered $611,295.85. The Walk to Defeat ALS also happened in different locations around the country. Since its debut in 2000, it has raised more than $159 million for research. Registration for the event is free and accepts volunteers for those who do not want to walk.
The Georgia Chapter also funds local care services to aid families in caring for members with ALS. They have equipment loans, assistive technology programs, support groups, and an educational symposium about the disease.