As a marketer, I questioned the effectiveness of the ALS Association’s Ice Bucket Challenge in 2014. Sure it raised heaps of money, but did the participants understand why they were pouring iced water over their heads? Would it have had a lasting brand impact?
As a human, I saw bullying and extreme coercion during the campaign. Bucket, ice, money or look like a bad person. As the campaign went viral people were being harassed several (many?) times. I wasn’t a fan. Sure it was for a great cause, but could they use a less nasty method?
For the second point, probably. But it raised more than $100 million – and most participants chose the ice bucket over donating cash. Some of those funds contributed to research by the University of Massachusetts Medical School which identified a third gene that is a cause for the disease. Which is a massive breakthrough. I may not have liked the methods, but the outcome was groundbreaking.
What is ALS?
ALS is one of the scariest, most devastating diseases in existence. Its full name is amyotrophic lateral sclerosis or Lou Gehrig’s Disease. In people with ALS, motor neurons deteriorate leading to muscle weakness and paralysis. So that’s all medical, but it means that people’s muscles waste away quickly and they can’t move for themselves. They need someone for just the basics, like feeding them with a spoon. Imagine having to have someone wipe you after going to the bathroom. That’s probably for me what appears the most humiliating. Not to mention the inability to go for a walk, or brush away a mosquito. After two to five years, the person’s muscles have wasted away so much they can’t breathe and die. That’s a really short time. Stephen Hawking has a very rare form of ALS, but his life is the exception.
There is currently no treatment or cure for ALS. There’s a drug called Rilutek, but it only extends life by a few months.
But it’s not all doom and gloom. We have some hope. The ALS Therapy Development Institute (which partnered with the ALS Association on subsequent ice bucket challenges) is developing the AT-1501 treatment, which is looking promising. It blocks specific immune cell activation and protects nerves against the progression of ALS and Alzheimer’s Disease. I don’t fully understand the science (thanks to Kathleen for helping with “translations” for me), but the ALS Therapy Development Institute has put it all here. I also liked that the treatment can also potentially help those with Alzheimer’s Disease. I was in a car accident a few weeks ago and was hit by a man who said he has dementia. I love that this might help people like him too.
What’s Stopping AT-1501?
Literally money. ALS is not an incurable disease. It is an underfunded one. The therapy was successfully tested with mice, and now just needs the funding for testing on people. This is big. The AT-1501 treatment could be an end to ALS.
#WhatWouldYouGive to #EndALS
I’m giving my time and blog space to help end ALS. What will you give? The ALS Therapy Development Institute is currently running the #WhatWouldYouGive campaign to fund the AT-1501 clinical trials. Bloggers, like me, have joined to raise $50,000 towards the goal and a generous donor has offered to match up to $25,000. This will go along way to helping find the clinical trials and finding an end to ALS.
Please donate as you can. I won’t publicly humiliate or guilt you. And no buckets of icy water required. It’s only gratitude.
If you’re a freelancer, like me, and cash isn’t as easy to donate, please consider donating some social media love. Below is an easy pre-written Tweet to share, or please visit @ALSTherapyDevelopmentInstitute on Facebook, @ALSTDI on Twitter, and @ALSTDI on Instagram. The hashtags are #WhatWouldYouGive and #EndALS. Everything helps.
[clickToTweet tweet=”#WhatWouldYouGive to #EndALS? Here’s how you can help @ALSTDI https://ooh.li/4094efc” quote=”#WhatWouldYouGive to #EndALS? Here’s how you can help @ALSTDI https://ooh.li/4094efc”]
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