Five Years Later—The Ice Bucket Challenge and YOU!

Let’s not kid ourselves, we can all use help with our memory from time to time. Maybe it’s a prompt like “where did you have it last?” or “Don’t forget Aunt Sally’s birthday is coming up.” Likewise, it can be hard to find the time to sit back and remember “that time when….” We are all busy, and maybe we’ll have time next week, or next month, or after school starts, or after school ends, to look back.

Still, this is one area where social media has been a help. Without that reminder from Facebook or Timehop, you might not remember that time when you took the time to watch the sunset, or won $25 from that scratch-off lottery ticket, or dumped a bucket of ice water over your head.

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Five Years Later—Dr. Hayat Remembers the Ice Bucket Challenge

Five years ago, the ALS Ice Bucket Challenge was soaking the world and bringing unprecedented attention to ALS. Last week on ALS Connect, we looked back on some of the relationships with corporate partners the Ice Bucket Challenge started or grew for the ALS Association St. Louis Regional Chapter. But for those already on the front line of the fight to treat ALS, the Challenge had special meaning. It brought attention, and funding, to a disease that many had been working tirelessly on for years. Among those people are the many that work at ALS Multidisciplinary Clinics across our region.

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Five Years Later—The Ice Bucket Challenge & Corporate Partners

It was the summer of 2014, and in St. Louis it was hot—nothing unusual about that. What was unusual was that people from all walks of life were pouring buckets of ice all over their heads. And not just to cool down, but for a cause. And it wasn’t just happening in St. Louis, but across the country, and even the world.

This was, of course, the Ice Bucket Challenge, the viral video phenomenon that took over social media and raised awareness—and over $115 million—for ALS.

The ALS Association St. Louis Regional Chapter was swept up in the phenomenon just like everybody else. People, companies and organizations across the region were taking the challenge. Some we knew already, most we didn’t, but with every new video and donation, the whirlwind of “that summer” got wilder and wilder.

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ALS Research—The Pace of Discover Is on the Rise

From the outside, research can seem like an endless process. As much as we all yearn for the “AH HA!” moment of discovery, more often than not the gains from any sort of research are incremental. Not so much finding a needle in a haystack as a slow, methodical, documented labeling of this piece of hay, then this piece, then this piece….As Thomas Edison said about the process of researching and creating the lightbulb: “I have not failed 10,000 times. I have not failed once. I have succeeded in proving that those 10,000 ways will not work. When I have eliminated the ways that will not work, I will find the way that will work.”

ALS research has proven to be just such a challenge to the best minds in the medical and scientific communities. But recent advances are creating excitement about new ideas and opportunities, aided in no small part by the influx of funding created by the Ice Bucket Challenge. With all that is going on, we wanted to take a moment to look at what is happening in ALS research—to see what is new, what is promising, and what the future may hold.

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Every August Until a Cure

LeBron James did it. Bill Gates did it. Oprah, Steven Spielberg and President George W. Bush did it. But the majority of people who took the ALS Ice Bucket Challenge in 2014 were not celebrities, just ordinary folks who got caught up in the fun of nominating friends and family on social media to be doused in water and ice for a good cause.  It’s safe to say, however, that there was definitely another reason why the Ice Bucket Challenge gained traction. ALS is a relentless disease that takes away a person’s ability to move, walk, talk, and breathe on their own and keeps them trapped in their body. To watch someone you know go through this is absolutely devastating, and knowing that there is no cure can sometimes make people feel both helpless and hopeless. For the thousands of individuals affected by ALS, this painful reality was fuel for action that inspired a community of people to come together four years ago to create the original ALS Ice Bucket Challenge.

What followed from this largest viral social media movement of all time was not just news feeds packed with ice bucket challenge videos, but real and meaningful impact for people with ALS – and for researchers searching for treatments and a cure.  The effects of the ALS Ice Bucket Challenge continue to be felt in the ALS community.

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Behind the Ice Bucket Challenge: How My Own Fight Against ALS Helped Fuel a Phenomenon

Powerful blog post from our friend Pat Quinn, courtesy of WebMD.

By Pat Quinn

When you’re diagnosed with a disease that has a life expectancy of 2-5 years, you will do anything to change that. Almost 5 years ago, I was stunned as I heard my doctor say, “It’s conclusive, we can confidently diagnose you with ALS.” It was the most surreal moment of my life. Sure, I had had some crazy twitching in my arms. Yes, my hands had become weak. But, 2-5 years to live? No, that was unacceptable to me. I was only 30 years old! So, after the initial shock wore off, I decided that I was going to fight.

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