ALS and the ice bucket challenge

You might have noticed groups of people over the last several weeks dousing themselves with buckets of icy water. The ice bucket challenge has exploded in the news and over social media, but this viral dare has an awesome purpose – to raise awareness of ALS. The challenge’s charitable mission has inspired organizations across the country, along with a slew of celebrities, to donate money toward raising ALS awareness. The frigid bath is a great way to show support for those with the disease and raise awareness.

What is ALS?

Amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells.¹ Motor neurons rapidly degenerate, and when the neurons die, the brain loses the ability to initiate and control muscle movements.² As ALS patients lose function in their muscles, they can experience paralysis in the later stages of the disease. Motor neurons reach from the brain to spinal cord, and then to the muscles throughout the rest of the body.³  When motor neurons lose the ability to send impulses, the muscles slowly atrophy. This is particularly dangerous in regard to respiratory muscles, which is why many ALS victims die of respiratory failure.

In recent history scientists have uncovered a wealth of knowledge about the disease, however, there is still no treatment or cure to reverse the degeneration. One drug, riluzole, has been shown to mildly reduce the progressive nature of ALS. There are also many physical therapies to help ALS patients live independently and prolong survival.⁴ Tragically, most patients die within five years of being diagnosed. Though most ALS patients are diagnosed after age 50, the disease affects people of all ages.

The ice bucket challenge

The ice bucket challenge has a very simple, viral nature – once you have been nominated, you have 24 hours to either donate money to ALS awareness or dump a bucket of ice water over your head. Post a picture or video of the challenge on social media as proof that you completed it. Once you have taken the plunge, you can challenge three friends, coworkers or acquaintances to do the same. The challenge has brought tremendous donations to the ALS Association. Over a ten day period, the ALS Association national office brought in over $160,000, after the challenge became popular in the Boston area.⁵ 

Former Boston College baseball captain Pete Frates was diagnosed with ALS in 2012. Frates is 29 years old, unusually young to be affected by the disease, which has left him paralyzed.⁶ Frates now uses eye retina software to communicate and has to take meals through a feeding tube. The former baseball player started sharing the ice bucket challenge over social media, and with the support of athletes in the Boston area, the fundraising trend quickly spread as news anchors, celebrities and politicians partook in the cold dunk.

The ice bucket challenge has now expanded across the entire country. “Tonight Show” host Jimmy Fallon, along with the legendary house band, The Roots, drenched themselves in icy water on national television. Though the fundraiser has a donate or dunk policy, many public figures are doing both, honoring the shower ritual on top of contributing monetarily. Celebrity involvement is only further raising awareness as many famous participants extend the challenge to other public figures. For example, after Fallon doused himself he offered up the challenge to the New York Jets football team.⁷ However, not all accept the dare. A representative of Lena Dunham cited that writer and actress was too busy to participate.⁸ 

Authorities suggest sticking to land when taking the ice bucket challenge, because participants jumping into cold, fast-moving water such as rivers could endanger themselves or potentially drown.⁹ To get involved, simply fill a bucket with cold water and some ice, then post it being dumped over participants on Twitter, Facebook or other social media.

The case of Stephen Hawking

ALS perhaps most famously affected Lou Gehrig, the legendary Yankees first baseman. Gehrig abruptly retired from baseball after being diagnosed with the disease.¹⁰ Many other famous athletes and entertainers have suffered from ALS, but in recent history one of the most notable is theoretical physicist Stephen Hawking. The brilliant scientist was diagnosed with ALS at age 21 and has survived with the disease for over 50 years.¹¹ Hawking’s case exemplifies the variability of ALS, which affects each patient differently. The physicist’s ALS is slow-progressing, which is very rare.¹² Though Hawking’s longevity is only seen in a small percentage of ALS patients, he serves as living proof of what ALS sufferers can accomplish after being diagnosed.

Recent research on ALS has linked the disease to multiple genes responsible for a build up of abnormal proteins in the brain.¹³ While there is currently no cure, several drugs are in the clinical trials phase and show promise of slowing down progression.¹⁴ As scientists begin to understand the genes the potentially cause ALS, pharm tech professionals will be tasked with creating drugs to fight off this degenerative malady.

¹“What is ALS?” ALS Association. http://www.alsa.org/about-als/what-is-als.html

²“What is ALS?” ALS Association. http://www.alsa.org/about-als/what-is-als.html

³“What is ALS?” ALS Association. http://www.alsa.org/about-als/what-is-als.html

⁴“What is ALS?” ALS Association. http://www.alsa.org/about-als/what-is-als.html

⁵“Ice Bucket Challenge Leads To 1,000% Spike In Donations To ALS Association” Boston AP. Huffington Post. August 11, 2014. http://www.huffingtonpost.com/2014/08/11/ice-bucket-challenge-fundraising_n_5668602.html

⁶“Ice bucket challenge floods ALS Association with money” by Jolie Lee. USA Today. August 12, 2014. http://www.usatoday.com/story/news/nation-now/2014/08/12/ice-bucket-challenge-als-association/13940323/

⁷“Celebs taking the plunge in ‘Ice Bucket Challenge’ for Lou Gehrig’s disease”  by Gersh Kuntzman. New York Daily News. August 12, 2014. http://www.nydailynews.com/life-style/health/hoda-kotb-takes-ice-challenge-article-1.1900554

⁸“Celebs taking the plunge in ‘Ice Bucket Challenge’ for Lou Gehrig’s disease”  by Gersh Kuntzman. New York Daily News. August 12, 2014. http://www.nydailynews.com/life-style/health/hoda-kotb-takes-ice-challenge-article-1.1900554

⁹“Ice Bucket Challenge Leads To 1,000% Spike In Donations To ALS Association” Boston AP. Huffington Post. August 11, 2014. http://www.huffingtonpost.com/2014/08/11/ice-bucket-challenge-fundraising_n_5668602.html

¹⁰“Just what is ALS?” ALS Association. http://www.alsa.org/about-als/

¹¹“How Has Stephen Hawking Lived to 70 with ALS?” by Katherine Harmon. Scientific American. January 7, 2012. http://www.scientificamerican.com/article/stephen-hawking-als/

¹²“How Has Stephen Hawking Lived to 70 with ALS?” by Katherine Harmon. Scientific American. January 7, 2012. http://www.scientificamerican.com/article/stephen-hawking-als/

¹³“How Has Stephen Hawking Lived to 70 with ALS?” by Katherine Harmon. Scientific American. January 7, 2012. http://www.scientificamerican.com/article/stephen-hawking-als/

¹⁴“What is ALS?” ALS Association. http://www.alsa.org/about-als/what-is-als.html