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 Trails 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