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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Lou Gehrig’s Speech—80 Years Later

The story itself is known to even the casual baseball fan: one of the game’s best ballplayers who had played more games in a row than anyone else, ever, got sick with a fatal disease that forced him to retire from the game he loved. When he retired he gave an eloquent, moving speech. Soon thereafter people started referring to the disease he had by his name: Lou Gehrig’s Disease.

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Building the Blocks of Congressional Action via ALS Advocacy—One Story at a Time

If you are an average American, you probably hold a low option of Congress. It has been more than 10 years since overall congressional approval ratings have inched above 30 percent, and during most of that time its rating has actually been somewhere below 20 percent. Among the reasons given for the lack of support is that “nothing gets done.”

But if you look beyond the hot button issues that dominate cable news, you often find that individual members of Congress and their staffs are not only open to, but eager to hear the thoughts of their constituents. They are, after all, elected by just these constituents, and listening to what they have to say is in a very real sense what they were elected to do.

As such, each June people with ALS, their families, and those who advocate for them gather in Washington, D.C., to learn about the latest ALS research, network, and visit Capitol Hill to share their stories with members of Congress and lay the groundwork for legislative victories. To be sure, the trip is not an easy one, especially for people with ALS. But many made the journey, and on Tuesday, June 11, the hallways of Capitol Hill were full with those advocating for people with ALS. In all, members of the ALS Association St. Louis Regional Chapter, Chapter board members, and local residents with ALS met with the offices of 11 representatives or senators from Missouri and Illinois.

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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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Care Services FAQ, Part 2

The care services team at the St. Louis Regional Chapter are the forefront of knowledge and information on ALS and what it looks like to live with the disease in our region. They answer questions from people with ALS and their families on a regular basis as they meet with families at clinics or during home visits. A few months ago, they answered some common questions they receive. Here is Part 2 of those FAQs.

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Unlocking ALS—One Step at a Time

The Walk to Defeat ALS® is a colorful event. Team t-shirts from nearly every color of the rainbow dot the landscape, along with hats, shoes, signs. Color is everywhere.

But returning this year along the route, there will be an additional pop of color—a pop of color with a purpose. In 2018 The ALS Association launched Unlock ALS at Walk events to provide participants with a tangible way to recognize the real reasons they Walk to Defeat ALS. At the walks, participants select a lanyard in one of four colors to represent their connection to ALS. These colors represent:

  • Yellow: I have ALS
  • Blue: I Walk in Honor of Someone with ALS
  • White: I’ve Lost Someone to ALS
  • Red: I Support the Cause and Want to Defeat ALS
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You Are Part of Finding a Cure for ALS—By Being an Advocate

The role we can play as individuals in finding new treatments—and a cure—for ALS can seem small. Most of us aren’t world class medical researchers. Most of us don’t have hundreds of thousands of dollars to donate to funding those doing that research. Our role in fighting ALS seems minor by comparison, but it isn’t. By adding our voices to the chorus of voices advocating for people with ALS we can—and do—play an important part of the fight for a cure.

As we continue with ALS Awareness Month, we wanted to look at ALS advocacy and explore what is being done, what can be accomplished, and what you can do.

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