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
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.
Continue reading A Clinical Trials Primer
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.
Continue reading The Ice Bucket Challenge—Looking Back to Look Forward
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.
Continue reading Perspectives from Lead Outreach Volunteer Sarah Diaz
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.
Continue reading Running and Walking for the Cause—and Pie
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
Continue reading Five Years Later—The Ice Bucket Challenge and YOU!
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.
Continue reading Five Years Later—Dr. Hayat Remembers the Ice Bucket Challenge
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