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What is ALS?

August 18, 2014

Unless you’re living under a rock, you’ve probably heard of the ALS Ice Bucket Challenge by now. To sum up, you’re nominated by a friend to either douse yourself in freezing water or donate $100 to ALS research. It’s kitschy and of course it’s silly, but you may be surprised at just how much this social media insanity has raised. The fact is, it’s working like a dream.

“As of Monday, August 18, The ALS Association has received $15.6 million in donations compared to $1.8 million during the same time period last year (July 29 to August 18). These donations have come from existing donors and 307,598 new donors to The Association.” – ALSA

Pretty rad, right? Well, enter all the Debbie Downers grumbling that people are only doing it for facebook likes… but to be honest, WHO CARES?? Money is money, and $15.6 million in donations is obviously better than $1.8 million. So whether you dump ice or dump funds (or… crazy idea… do BOTH!) this campaign is proof that you can make a difference.

However, the true mission was to raise funds AND awareness for ALS. So just in case you aren’t really sure what ALS is, I want to tell you about the disease so we can have a collective high-five for all the money we’ve raised!

ALS stands for amyotrophic lateral sclerosis and is sometimes called Lou Gehrig’s disease (because the famous baseball player died from it). It’s a progressive neurodegenerative disorder, meaning neurons in the brain and spinal cord begin to die. In the case of ALS, motor neurons that stimulate voluntary muscle movement are the ones that die, and as a result the muscles they innervate begin to atrophy and shrink. It’s much like “use it or lose it.” The patient experiences muscle spasms, weakness and eventually paralysis and death.

Most people die of respiratory failure about 3-5 years after onset of symptoms. There are some familial forms, often linked to mutations in a gene called SOD1, but the majority of ALS patients have no family history and no known cause. Sound shitty? That’s because it is. And that’s exactly why we need more research.

While there is no cure, there are clinical trials for treatments like Ozanezumab, an antibody in Phase 2 trials. Many ALS drug treatments don’t pass Phase 2 or 3 (trials go up to Phase 4 before a drug is approved), proving just how helpless we really are to treat this devastating disease. That’s exactly why the viral ice bucket challenge is so amazing. The donations collected will not only help scientists better understand what causes ALS, but how they can treat and possibly cure it someday. Bonus – it’s fun to see celebrities doing something so ridiculous.

Bill Gates

Jimmy Fallon

Oprah

Lebron James

My personal favorite, Paul Bissonnette

Grabbing public attention for scientific research is also important, because it shows the population that we aren’t mad scientists behind closed doors doing who knows what. We’re humans, like everyone else, and we’re trying to improve the lives of those affected by terrible diseases like ALS.

So I say dump that ice water, friends! And donate if you possibly can, because every dollar helps.

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From → Biology

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