Remember Those Ice Bucket Challenges? They Led to Groundbreaking Research

How an awesome grassroots marketing campaign is changing the world.

Photo by Major Tom Agency on Unsplash

Hello, I’m Tiffany, and I challenge Sean Kernan to the next Ice Bucket Challenge.

Kaplshhhhh!

I’m glad this didn’t happen. Because that would have been the end of that loop.

But seriously, those ice bucket challenges were relentless. They hijacked YouTube back in 2014–2016. Meanwhile, there was a lot of noise and complaining about them.

Why are people doing this?

It’s all for attention.

They just want people to see them in a swimsuit.

While there may be some truth to all that — those ice bucket challenges made a huge impact on the world.

A Couple Whose Life Changed

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Source: photo via Royce and Natalie

This is Royce and his wife Natalie. They were married in 2010. They were an active couple who loved hiking and being outdoors. They went camping and cliff diving.

But, in a cruel twist of fate, and only four months into their marriage, Royce began falling and experiencing weakness in his legs. Finally, at his wife’s behest, they went to the doctor.

They received a devastating diagnosis. He had ALS, Lou Gehrig's Disease.

The disease causes the body to kill off nerve cells in the spinal cord and brain. You slowly become paralyzed and lose muscular function. You get trapped in your body over time. Eventually, your nerves lose access to your lungs, and you’ll die. There is no cure.

The Fight Began

They mounted a heroic effort. Natalie was an ICU nurse, who was skilled and capable of helping him. But they’d just had their first child and it eventually became too much.

They got help and did various fundraisers. They did several races and charity events scraping together money for research.

They also aggressively sought what limited treatments were available. However, Royce deteriorated more with each year. They continued living the best life they could.

Depicted below is his daughter feeding him a treat. He couldn’t move his arms at this stage.

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Source: photo via JourneywithRoyce

As his mobility failed, he learned to use his electric wheelchair and stayed optimistic. As his ability to communicate diminished, he learned to type with his eyes and started his own blog.

Eventually, he lost his battle in 2018, with his wife by his side until the end. He far exceeded the average life expectancy of 2–4 years.

His partner wrote of him:

“As Royce passed, I wondered how and where he will visit me from now on. Would it be in ocean breezes, leaves falling, cold creek water, or spring scents? I realized it would be in the sparks of life. In campfires and candles and flashes of lightning.

Every time I see a flame ignite, every time a bright idea pops into my mind, I’ll think of Royce, and I’ll be reminded to get out and do something fun, something creative, something interesting.”

How Did the Ice Bucket Challenges Affect This?

Royce’s story is the story of many like him: the slow loss of function and independence, and eventually, their life.

The Ice Bucket Challenge was a marketing campaign on their behalf. You either make a donation to ALS Research or get drenched in ice water or both, which was common.

And to the constant critics who said, “This challenge is only for attention.” You were wrong. The money was well spent.

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Source: ALS Association

But the above was only as of 2014. In total, and as of 2020, a full $225 million has been donated to ALS Research.

What Changes Did This Lead To?

They developed several new therapies and made critical discoveries in understanding the disease. Remember, with an incurable disease, you must first understand it in order to treat it. But there was an additional breakthrough.

There are a number of mysterious proteins in the body that aren’t fully understood. One of them is TPD-43. Through Ice Bucket Funding, they’ve discovered this protein is intrinsically related to ALS (most diseases originate from an extremely small origin point).

In short, the protein isn’t doing its job correctly (protecting nerves). They figured this out via autopsies of ALS patients, who all showed pervasive dysfunction of TPD-43.

Now, they’re developing treatments that trick these proteins to stop killing nerves. This will significantly slow down the progression of ALS. In fact, the treatments are already working with mice.

This couldn’t have happened without these ice bucket challenges.

Lastly: An Idea Can Change the World

PR, marketing, and fundraising often get convoluted with attention-seeking tactics, which are, to some extent, necessities of the trade. To designate them all as cheap marketing tactics does a disservice to the diverse set of players.

The Ice Bucket challenge penetrated every corner of our culture.

It was the trifecta of great non-profit marketing: fun, innovative, and monetarily effective. It’s proof that an idea can change the world.

Like HIV, there won’t likely be a cure anytime soon for ALS, but there will be a way to slow its advance. It’ll extend life for people like Royce, with more mobility, independence, and time with their families.

One final cool fact:

Stephen Hawking had ALS. He was a freak outlier in terms of survival. They suspect he lived so long because he developed the disease at such a young age.

He was buried between Sir Isaac Newton and Charles Darwin.

Fundraisers like the Ice Bucket Challenge, unquestionably, extended his life.

And Stephen never let that time go to waste.

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Source: pic via Flickr

“People who boast about IQ scores are losers.” — Stephen Hawking

Written by

Quality over quantity. That guy from Quora. Enjoy? Follow for more. https://seanjkernan.substack.com/ Open to gigs seanjkernan@gmail.com

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