So You Did The Ice Bucket Challenge, Now What?

Along with 2.4 million other people, I shared a video of myself doing the ALS ice bucket challenge on Facebook in the summer of 2014. I excitedly watched ice bucket challenge videos go viral and waited for my turn to get tagged in one so I could participate and be a part of the “in crowd.” I willingly participated when I was challenged and tagged a handful of friends and family members to pass it on when my turn came and that was the last I thought of it

I have a feeling my ice bucket challenge narrative might sound familiar to some. Prior to doing the challenge, with neuroscience among my majors, I was familiar with amyotrophic lateral sclerosis (ALS) and knew it was a neurodegenerative disease but I didn’t really think much about it. I knew it struck primarily men, and thought I was safe, since I did not even know females could get ALS.

The fact of the matter is, ALS is perhaps the most devastating disease I can think of. Symptoms come quickly, one day you’re a healthy 28-year old, the next day you feel a bit weak and tired, and within just a couple of years, your motor neurons in your spinal cord have completely died, leaving you paralyzed, but still completely aware of your surroundings. With no curative treatment, average life expectancy for someone diagnosed with ALS is 2-5 years. The single approved treatment only prolongs life by a couple of months and costs thousands of dollars.

ALS is characterized by the degeneration and death of motor neurons in the spinal cord. While the reason for the cell death is unknown, it is thought that oxidative stress in our cells brought on by free radical molecules cause the mitochondria (responsible for making cellular energy) to become defective and send the cell down the death pathway (apoptosis). In addition, RNA (the intermediate between DNA and protein products) is found to be deregulated in ALS, which in turn causes more cell stress, mitochondrial damage, and leads to apoptosis.

The truly terrifying thing about ALS is that you can do absolutely nothing to avoid getting it. I’d like to think I’m a fairly healthy person, I don’t smoke, I exercise, and I eat my vegetables. While this might be great to avoid cancer, if I’m going to get ALS, I’ll get it regardless of anything I do or do not do. There is also no way to predict who will get ALS. There is no magic “ALS gene” that you can test for if a family member has ALS. While familial ALS is a type of ALS, it only makes up 5% of cases of ALS, leaving sporadic ALS to make up 95% of cases, leaving it totally up to chance.

The good news is that there is good news. In 2014, the ice bucket challenge raised $115 million for the ALS foundation. Of that, $3 million went to fundraising efforts, $10 million went to public and professional education, $23 million went to patient and community services, and $77 million went to research for ALS. This astounding amount of money dedicated to research assisted in identifying a new gene thought to be implicated in about 3% of ALS cases, NEK1. While 3% doesn’t seem to be that much, it a larger percentage of cases than any of the 20 other genes implicated in ALS. While not much is known about NEK1, since it was only recently identified as being implicated in ALS, it is thought to be involved in cell cycle regulation, which can tell a cell when or when not to divide or die.

Until scientists find a cause, conclusive test for ALS, and a cure, the most we can do is support patients with ALS and their families by continuing to raise money and awareness for ALS. Talk about ALS, participate in future ice bucket challenges, and maybe donate some money to the ALS Foundation. Visit the ALS Foundation website for ways to get involved, including the ALS Foundation walk hosted in Fargo/Moorhead on August 19, 2017.

ALS Foundation website: