Everyone from former President George W. Bush, movie stars like Will Smith, Matt Damon and Ben Affleck to your very own mother are doing it. The ice bucket challenge is a fun activity, providing video viewers with hours of entertainment. I mean, how can you not laugh at some of those bloopers? But it's also helping to raise millions of dollars for a worthwhile cause.
ALS, or amyotrophic lateral sclerosis, is a neurodegenerative disease that affects the brain's ability to communicate with the body's spinal cord, effectively shutting down the body's muscle movements. Once this happens, muscles throughout the body, including some vital organs, fail to work. In some cases patients are no longer capable of swallowing. Others lose the ability to control their breathing. The only constant is that the disease is fatal.
With confirmed diagnoses of 12,000 Americans, according to the National Institute of Neurological Disorders and Stroke, the disease is most closely associated with former New York Yankees great Lou Gehrig, who was forced to retire in 1939 after his diagnosis. But doctors knew about the ailment as far back as 1869, when French neurologist Jean-Martin Charcot made the discovery.
So why does ALS strike? Well, scientists don't quite know yet. However, in 1993, researchers discovered mutations of a gene that produces the SOD1 enzyme. The mutation, they said, is associated with the majority of ALS cases, which are familial. Since then, more than a dozen different mutations have been discovered and researchers have even tied the disease to certain kinds of dementia in patients.
There's also interest in studying environmental factors in determining why patients develop the disease. Exposure to toxic or infectious agents, as well as physical trauma or behavioral and occupational factors, can all play a role in developing ALS. For example, studies of populations of military personnel who were deployed to the Gulf region during the 1991 war show that those veterans were more likely to develop ALS compared to military personnel who were not in the region. Athletes, like football players, have also shown higher diagnosis rates than the general public.
Football players are 4 times more likely to die from ALS, according to a 2012 study by the National Institute for Occupational Safety and Health in Cincinnati.
Published in the journal Neurology, researchers looked at the medical records of 3,439 footballers who played at least five seasons in the NFL between 1959 and 1988.
But Everett J. Lehman, the lead researcher in the study, said a new player in the neurodegenerative disease field may steal some of those deaths away from the ALS, as chronic traumatic encephalopathy – or CTE – may have been the primary or underlying cause of some of the deaths. In his findings, Lehman said, “These results are consistent with recent studies that suggest an increased risk of neurodegenerative disease among football players. Although our study looked at causes of death from Alzheimer's disease and ALS as shown on death certificates, research now suggests that chronic traumatic encephalopathy (CTE) may have been the true primary or secondary factor in some of these deaths.“
While ALS may not have killed as many football stars as once thought, it is still just as deadly to those who've been diagnosed. Most prevalent among those ages 40 to 70, according to the ALS Association – the disease's leading charitable support organization – about 20 percent of those diagnosed survive their first 5 years after the disease begins progression, and percentages of survival drop by 5 percent for each 5-year span from there. There is a treatment available approved by the Food and Drug Administration to help delay the onset of the worst symptoms, but this drug, called riluzole (RI-lou-zole), only works for a few months and no drug trials have been successfully shown to provide a more permanent delay.
That's where the ice bucket challenge comes in. The association alone has recorded more than $94 million in donations since the challenge took off with celebrity support, becoming the latest viral craze and leading to plenty of cold showers. Earlier this month (August), the association announced $3.5 million in new research grants were being committed to 21 projects in nine states, along with the U.K., Canada and other countries, all designed to find treatments and a cure for the deadly disease. And with record-breaking donations continuing to flood in, the organization's leadership has vowed to proceed with more due to the overwhelming volume.
Borrowing a phrase from everyone's favorite comic book web-slinger, association president and CEO Barbara Newhouse said, “The ALS Association has been given a great deal of money and with that comes tremendous responsibility. We are absolutely committed to transparency and will be communicating regularly with the ALS community, our donors, the media and the public about progress to invest these dollars wisely in areas that will have maximum impact on the fight against this devastating disease.”
So, next time someone challenges you or your mom to take the ice bucket challenge, you can tell them exactly why you'll accept.
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http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm
http://www.alsa.org/
http://www.neurology.org/content/79/19/1970.short?sid=bfcdda4b-984c-482c-a83b-4f255725f209
