This past summer, everyone from former President George W. Bush to Yeshiva University President Richard M. Joel accepted a challenge. The challenge—aimed to raise funds and awareness for ALS—was embraced by politicians, celebrities, athletes, professionals and students across the globe.
The challenge: pour a bucket of ice water over your head, or donate $100 to the ALS Association.
While the challenge dominated peoples’ social media pages over the months of July and August as friends, relatives, and co-workers got soaked for a cause, few actually know what ALS stands for. And after receiving widespread attention only very recently, many people are still uninformed about the disease behind the bucket.
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects the nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to the death of these neurons, diminishing the ability of the brain to initiate and control muscle movement. The nerves that are affected in a person with ALS are the motor neurons that provide voluntary movements and muscle power.
With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look “thinner” as muscle tissue atrophies.
According to the ALS Association, symptoms of the disease are variable but commonly include muscle weakness, twitching (fasciculation) and cramping of muscles (especially those in the hands and feet). “Thick speech” and difficulty in projecting the voice can also occur and in more advanced stages, shortness of breath, as well as difficulty in breathing and swallowing may result. ALS can be diagnosed using a host of methods, which include blood and urine studies spinal tap, x-rays and MRI, muscle and/or nerve biopsy, and neurological examination.
ALS is responsible for nearly 2/100,000 deaths annually and as many as 30,000 Americans may have the disease at any given time. The life expectancy of a person living with ALS varies from 2-5 years from the time of diagnosis, although many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.
According to the Mayo Clinic, 5-10 % of people with ALS inherited it as familial disease, an autosomal dominant trait. 90% of cases are sporadic; predominate between the ages of 40 and 60, and are slightly more common in men than women below the age of 65. Environmental factors that may be linked to development of the disease include smoking and lead exposure. Recent studies indicate that people who have served in the military are at higher risk of ALS possibly due to exposure to certain metals or chemicals, traumatic injuries, viral infections, and intense exertion.
To date, no cure or treatment can effectively halt or reverse ALS. But there is one FDA approved drug, riluzole, that slows the progression of ALS as well as several other drugs in clinical trials that hold promise. Importantly, there are significant devices and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. Breathing therapy, speech therapy, physical therapy, occupational therapy, nutritional support, and psychological and social support can be a source of relief to patients and their families and improve quality
of life.
The Ice Bucket Challenge, popularized by Massachusetts resident and ALS patient Pete Frates, seeks to improve the life of patients by raising funds for research and for the various treatments available. As of mid-September, the challenge raised over 115 million dollars, a staggering increase in funds from the previous year. Individual philanthropists and corporations, such as Leonardo DiCaprio, T-Mobile and Carnival Cruise Lines have personally pledged over $100,000 for the cause. Another major contributor to the cause is the NY Yankees, who lost a valued player to the disease in the 1940’s. Lou Gehrig, known as the “Iron Horse” of baseball, brought national and international attention to the disease after his subsequent diagnosis in 1939. In his honor, ALS is also commonly referred to as “Lou Gehrig’s disease.”
Yet the challenge has drawn many criticisms and some people prefer to refrain from partaking in it. Criticisms include the unethical practices of animal and embryonic stem cell research in support of a cure, the dangers of the challenge itself for patients with health complications, and the wasting of water. Proponents of other diseases and charities have sought to copy the challenge and have used social media, such as Twitter and Facebook, as a platform.
Facebook has been so instrumental in publicizing the Ice Bucket Challenge that the social media website has raised its own fair share of funds from the challenge. In a recent Forbes article, the Ice Bucket phenomenon was stated to have raked in more than 1.3 billion dollars in revenue. More than 10 billion video views were achieved with the challenge and more than 440 million people were reached.
While the high numbers associated with the challenge are impressive, nothing is more impressive than the attention the challenge has received. All over the country and the globe, people are moving for a cause and taking action, whether by dumping a bucket of ice over their heads or by making a donation. But next time some mentions the challenge, think about the disease driving the movement, and not just only the funny videos trending on your Facebook feed.
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