ALS_Connect

A Clinical Trials Primer

First, the obvious: everyone wishes there were more effective ALS treatments found already. Progress is being made, with five new genes discovered and two new treatments in the last five years—we are closer than ever to the possibility of a cure. But, even as we talk about how there have been real, tangible discoveries in ALS research, we cannot yet point to a reliable treatment to dramatically slow progression of the disease, let alone a treatment that stops progression or acts as a cure. It is heartbreaking for people with ALS and their families.

But for people with ALS, there is an active role they can take in fighting the disease: by participating in a clinical trial. For while the search new therapies begins in the laboratory, where ideas for new treatments are tested in cell cultures or test tubes, if a treatment shows enough promise it must eventually be tested on the intended end user, meaning human beings—living, breathing people.

The Ice Bucket Challenge—Looking Back to Look Forward

We’ve spent some time here and on social media over the last couple of months looking back at the Ice Bucket Challenge. The occasion, of course, was the fifth anniversary of the Challenge, and the chance to remember and recognize some of the people, companies and organizations who took part in the Challenge and have joined us on the journey to support those with ALS and the quest to find new treatments and, someday, a cure.

But the risk of looking back is that you’ll forget to look forward. So as we move into the next five years since the Ice Bucket Challenge, we wanted to focus on what the dollars contributed by you in our community continue to do to make a difference.

Perspectives from Lead Outreach Volunteer Sarah Diaz

We’d like to introduce you to Sarah Diaz, our new Lead Outreach Volunteer (above left with her mother, brother, sister and father). She will be representing our chapter at community events around the region. We asked Sarah if she’d tell us a little bit her of story and she graciously shared the impact ALS has made on her life and how she hopes to impact the lives of others.

Running and Walking for the Cause—and Pie

First the obvious: You could do worse for a Saturday morning than a scenic run or walk through Kimmswick, Missouri. But that’s not the only reason the quaint, tree-lined streets along the Mississippi River will be busy this Saturday morning. As it has since 2011, a community will gather together in support of and in memory of one of their own. And as in 2011 and every year since, it has continued to help support those with ALS and in the search for new treatments, and a cure.

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.

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.

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.

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.

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.