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.
Continue reading Five Years Later—The Ice Bucket Challenge & Corporate Partners
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
Continue reading Lou Gehrig’s Speech—80 Years Later
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
Continue reading Building the Blocks of Congressional Action via ALS Advocacy—One Story at a Time
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.
Continue reading ALS Research—The Pace of Discover Is on the Rise
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.
Continue reading Care Services FAQ, Part 2
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:
Continue reading Unlocking ALS—One Step at a Time
- 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
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.
Continue reading You Are Part of Finding a Cure for ALS—By Being an Advocate
For the general public, ALS might bring some specific images
to mind. Many might think of grainy black and white newsreel footage of Lou
Gehrig standing in Yankee Stadium. Others might picture the same scene but
replace the actual Gehrig with Gary Cooper from the movie Pride of the Yankees. Still others might picture—and hear—Stephen
Hawking and his computer-generated voice. More recently, Steve Gleason has
become what many think of when they think “this is what ALS looks like.”
But for those living with ALS and those caring for them, the
disease isn’t embodied by a famous person, present or past. ALS looks like a
kitchen reconfigured to allow for a power wheelchair at the table. It sounds
like a ventilator or the hum of other medical devices. It feels like grips on
silverware or textured plastic cups.
As we begin May and ALS Awareness Month, we want to explore
what ALS looks, feels and sounds like for those with ALS and their families. As
these families know, the progression of the disease means near constant change—some
that can be planned for, and some that can’t.
Continue reading This is What ALS Looks Like
As the days grow longer and warmer, we in the Midwest turn out thoughts to summer. And with summer comes the ALS Association St. Louis Regional Chapter Walks to Defeat ALS®. The Springfield, Illinois, Walk is June 15 in in Southwind Park. The St. Louis Walk is June 22 in Forest Park.
These walks would be not be possible without the work of the
Walk Committees. Committee members are involved as participants and behind the
scenes, playing an integral role in the success of the events. The committees
assist in booking vendors, securing in-kind donations, supporting team
captains, recruiting volunteers and assisting with the planning of the events.
Continue reading Walking Together: Walk to Defeat ALS Committee Members Walk for Many Reasons
Conversations about end-of-life care and advance care planning are difficult in the best of circumstances. For those with ALS and their families, these conversations present their own challenges, and the challenges of these conversation are often unique. It can be hard to think about planning for the future while the present has so many complications of its own. It can also be upsetting to think about declining abilities and the inevitable outcome of the disease. But having these important conversations about the future at a time and place that you decide can provide piece of mind for everyone involved.
Continue reading Having the Conversations None of Us Want to Have