It Takes All of Us—ALS Awareness Month

You’d be forgiven by most if you admitted you can’t keep up. There are awareness months, weeks or days for so many things. It’s not that it is a bad thing, it’s just that it is it so much. And yet here we are again, reminding you that May is ALS Awareness Month. Why?

And honestly, if you are a regular visitor here, you don’t really need reminding. As a part of the ALS community you are well aware of the challenges of this horrible disease. You are aware of the progress in research being made even as we all wish it would move faster. You are aware of the funding ALS advocates have been able to secure even as we all wish it could be more.

Still, ALS is categorized as a rare disease, and for a large portion of the overall population, ALS isn’t something that crosses the mind very often. Sure, they probably know about Lou Gehrig and “Lou Gehrig’s Disease,” and they probably remember the Ice Bucket Challenge and what a wild ride that was. But other than that? Like we said, it’s hard to keep up.

So it as much to remind the world as to remind ourselves that each May we work to shine a light on all people with ALS, and all the people who are working every day to find treatments, and a cure. To remind everyone that of the more than 140 active research projects around the world. To remind everyone that thanks to more than 40,000 ALS advocates, we secured millions in additional federal dollars to support that research, veterans with ALS, and to empower people with ALS to live life to the fullest.

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Thanks for Stopping By—Our 200th Post on ALS Connect

We admit, it snuck up on us. We have been posting here at ALS Connect since 2016, and it didn’t really occur to us to check in on how many posts that was. But as it turns out, this is the 200th post since we started back then. So it seemed appropriate to take a quick look back before we start into the next 200.

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“I chose to use my situation as motivation…”—Pattie Hamlin Honored with ALS Association Hero Award

Like many people, Pattie Hamlin took part in the ALS Ice Bucket Challenge in 2014. And like many people, she did it in support of the cause but without a deep connection to the disease. But that all changed just a few years later.

Pattie Hamlin was diagnosed with ALS in 2016, but she did not let that slow her down.

“Shortly after being diagnosed I began researching and discovered how devastating this disease really is,” Pattie says. “In those early months I struggled emotionally with the outlook that was now my reality. Eventually, I chose to use my situation as motivation to try and make a difference for the future of ALS.”

For her tireless efforts in support of our Chapter and the ALS Association as an ALS advocate, fundraiser, and ambassador, Pattie was honored with the Hero Award virtually during the ALS Association 2021 Leadership Conference in February.

Continue reading “I chose to use my situation as motivation…”—Pattie Hamlin Honored with ALS Association Hero Award

Remembering Pat Quinn, and how “Everything can Change in an Instant”

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:

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Communities Join Together to Support People with ALS and Fight for a Cure

A community partner event is a fundraising activity that is organized and managed by a family, group or individual who is acting independent of The ALS Association St. Louis Regional Chapter. This August, five community partner events took place across eastern Missouri and central and southern Illinois, ranging from a tractor pull, an awareness walk before a baseball game, and two different golf tournaments. There was even an ALS Ice Bucket Challenge event earlier this month, four years after the original Ice Bucket Challenge swept social media and national headlines. This August, and every August until we find a cure, reminds us that great things happen when we come together. With all of the extra events throughout the region it was even more exceptional.

Each event has a huge impact on the community and helps people with ALS and their families in several ways. Here are five reasons community partner events are a great way to get involved in the fight against ALS.

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Every August Until a Cure

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

The ALS Ice Bucket Challenge: How It Helped and Why It Matters

Nearly three years ago, on August 4th, a peculiar news item showed up on our social media feed at The ALS Association St. Louis Regional Chapter.  Someone had posted an article from Shape Magazine that described something called an “Ice Bucket Challenge,” where people across the country were dumping buckets of water on their heads and challenging three other people to do the same thing. It seemed like a fun, interesting way to raise awareness for ALS, so we shared it to our page and asked our Facebook fans, “Have any of you heard of this?”  The rest of August became a blur of ice and water – it was incredible.

Continue reading The ALS Ice Bucket Challenge: How It Helped and Why It Matters