ALS CONNECT

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.

Walk a Crooked Path: Help By the Bucketful

By Saundra Stewart

I am not a water lover – not in the slightest. I like to look at it, I like to drink it, and I like to take showers in it. But that’s about as far as my love for water goes. One time, when Don and I had taken a trip, we were relaxing in the motel pool. I accidentally stepped off into the deep end, and I seriously thought I was going to drown! All Don had to do was reach out his hand (we were actually that close together) and I was instantly rescued. My hero!

So, when I heard about something called “The Ice Bucket Challenge”, I wasn’t interested. Have I said that I don’t like water? Well, that goes double for ice cold water. Don, on the other hand was immediately up for the game. He was already wearing the c-pap most of the time, and breathing was a labor. But he wanted to help raise money. In fact, he was dead set on it!

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.

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.

Craig Kramer: Why I Walk

It’s been over a year now since I’ve been diagnosed with ALS. Has my life changed? Absolutely! And a huge chunk of it has changed for the better! But it isn’t only about me; it’s all about family and friends—and it turns out there are lots of them!! Here are some of the wonderful life-changing things that have happened since my diagnosis, and some of them likely wouldn’t have occurred:

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.

Walk a Crooked Path: Make It Easy on Yourself

By Saundra Stewart

ALS is unique in that no two cases start exactly the same, and no two cases end exactly the same. Don made some decisions early on in his illness (no feeding tube and no vent) that affected the way I cared for him. Your situation will be different, but let me share what worked for us.

There’s so much involved in caring for an ALS patient that I often thought there just weren’t enough hours in the day to do it all and do it well. So, I used everything I could to make my life easier. Don made it easy, because he wasn’t afraid to try new things, if I thought it was worthwhile. I kept my eyes and ears open for new gadgets or methods of operation that would lighten my work load, but still get the job done effectively. Here are some of the things I found: