Less than a week before Thanksgiving, Pat Quinn, co-founder of the ALS Ice Bucket Challenge, passed away from the disease. His passing follows that of the other Ice Bucket Challenge co-founder Pete Frates, who passed away in December 2019.
It might be tempting to think of Pat’s passing as just another example of how difficult 2020 has been, but when Pat spoke on the 5th Anniversary of the Ice Bucket Challenge in August 2019, his message was not one of dwelling on our setbacks, but one to embrace the possibilities life offers:
Continue reading Remembering Pat Quinn, and how “Everything can Change in an Instant”
It’s the time of year where you almost can’t help looking back. In a few short days 2019 will be no more. The year has been one of milestones and new beginnings for us here at the ALS Association St. Louis Regional Chapter, and while we are looking back we wanted to include you and remember what a year it’s been.
Continue reading The Year That Was—Looking Back
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
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
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
LeBron James did it. Bill Gates did it. Oprah, Steven Spielberg and President George W. Bush did it. But the majority of people who took the ALS Ice Bucket Challenge in 2014 were not celebrities, just ordinary folks who got caught up in the fun of nominating friends and family on social media to be doused in water and ice for a good cause. It’s safe to say, however, that there was definitely another reason why the Ice Bucket Challenge gained traction. ALS is a relentless disease that takes away a person’s ability to move, walk, talk, and breathe on their own and keeps them trapped in their body. To watch someone you know go through this is absolutely devastating, and knowing that there is no cure can sometimes make people feel both helpless and hopeless. For the thousands of individuals affected by ALS, this painful reality was fuel for action that inspired a community of people to come together four years ago to create the original ALS Ice Bucket Challenge.
What followed from this largest viral social media movement of all time was not just news feeds packed with ice bucket challenge videos, but real and meaningful impact for people with ALS – and for researchers searching for treatments and a cure. The effects of the ALS Ice Bucket Challenge continue to be felt in the ALS community.
Continue reading Every August Until a Cure
Powerful blog post from our friend Pat Quinn, courtesy of WebMD.
By Pat Quinn
When you’re diagnosed with a disease that has a life expectancy of 2-5 years, you will do anything to change that. Almost 5 years ago, I was stunned as I heard my doctor say, “It’s conclusive, we can confidently diagnose you with ALS.” It was the most surreal moment of my life. Sure, I had had some crazy twitching in my arms. Yes, my hands had become weak. But, 2-5 years to live? No, that was unacceptable to me. I was only 30 years old! So, after the initial shock wore off, I decided that I was going to fight.
Continue reading Behind the Ice Bucket Challenge: How My Own Fight Against ALS Helped Fuel a Phenomenon