In a lot of ways, the origins of the “town hall” meeting are uniquely American. Sure, community gatherings have been happening from the time there have been communities to gather, but since the early days of colonial America, the gathering of a group of concerned individuals to be updated on current events has been a time honored tradition that persists to this day across the country. The idea has become so much a part of us that we don’t think twice that “town hall” can easily refer as much to a meeting as it does to a building.
But just because the town hall concept is old doesn’t mean it has stayed the same, and in 2020 when nothing seems normal the concept has had to evolve even more. What might have in the past been in-person gatherings have become virtual, expanding the scope and reach even further. But the basic idea of gathering a community to be updated on current events remains.
In just such spirit, our Chapter hosted a virtual town hall meeting in September to discuss the current state of ALS care services, research, and advocacy. Members of our community were able to hear from experts in these areas and ask question to the speakers. The full 90 minute recording is available for all to view.
Continue reading ALS Virtual Town Hall Brings Community Together
The emotional costs of ALS put a strain on every family who must face the disease. But even while a family faces these challenges, the financial costs of ALS are there as well. The cost to a person with ALS averages around a quarter of a million dollars over the course of the disease. That cost comes in the form of piles and piles of bills, insurance forms, and more forms, and more bills. And while each family’s financial challenges are different, the reality is that these challenges make an already difficult situation that much more so.
To better understand these challenges, The ALS Association and its partners made “understanding the insurance needs and financial burden” of people with ALS the topic of the first ALS Focus survey conducted earlier this year, the results of which are now available.
Continue reading Assessing the Financial Burden of ALS—FOCUS Survey Results
Yep, we’re still here. Even while some parts of the country have reopened, many of us still find ourselves working from home, and many are facing the reality of the school year starting up as the last one ended, with distance learning. We are still facing uncertainties around health, and jobs, and just life in general. There are still many, many days when this “new normal” doesn’t feel very normal at all.
But one thing many of us have gotten better with during this unusual time is finding ways to connect that we hadn’t thought of, or used sparingly before. Grandparents are scheduling Zoom meeting with their grandkids. Virtual happy hours are connecting groups of friends that haven’t had an actual in-person happy hour in years. We can’t see as many people as we used to, but we are “seeing” some people we maybe wouldn’t have thought to connect with if things were “normal.”
And there are some opportunities to connect that have been expanded with the ability to gather in-person taken away. An example? How about our Swing for a Cure program and auction.
Continue reading New Normal, New Possibilities—Swing for a Cure Virtual Program and Auction
We are all tired. Some of us are tired of working from home. Some of us are tired of waiting to get to work again. We are tired of cooking and doing the dishes for what seems like the millionth time. We want our kids to go back to school. We want to hug our friends. We want things to feel normal again.
We keep thinking about “when this is over….”
But ALS has no respect for COVID-19. It is not waiting patiently on the sidelines while we deal with this new interloper. Every 90 minutes, someone is either diagnosed with ALS or dies from the disease. While we are waiting for things to go back to normal, a person with ALS must face the fact that their average life expectancy is 2 to 5 years, regardless of how long this other pandemic lasts.
All of this is why we can’t wait. We can’t wait to find new treatments. We can’t wait to find a cure.
Continue reading We Can’t Wait
It started out of necessity, really. When it was decided—for the well-being of all involved—that we would not be gathering in Forest Park for the St. Louis Walk to Defeat ALS this Saturday (June 27), our Chapter had to think about new ways to put on the event that keep the sense of community that joining together in support of those with ALS and in support of the search for a cure creates. We think we’ve created a Walk that will bring that sense of community to streets and neighborhoods throughout our region this Saturday, and we hope you’ll take part.
Among the most important parts of Walk day is the memorial banner, which lists the names of each person our Chapter served who has lost their battle with ALS and anyone who is being walked in memory of. As we won’t all be gathering together this year, we needed to find a new way to remember those who we have lost, so we created a virtual memorial banner and posted it to our Walk to Defeat ALS Facebook page.
The post resonated with many in our community, and we wanted to share it with you here as well. ALS does not stop, and neither do we. This Saturday we Walk in honor of those living with ALS and in memory of all we have lost. We hope you’ll join us.
Continue reading In Memorial—Why We Walk
We are a little bit more than a week away from the 2020 St. Louis Walk to Defeat ALS, and just a couple of days away from Father’s Day as well. Because of COVID-19, both will be different than they have been in years past, but both are still important.
As you have heard, for the safety of the people with ALS we serve, their families, our staff and supporters, the 2020 St. Louis Walk to Defeat ALS will not occur in Forest Park on June 27. We will still be walking to defeat ALS, but we will all be walking where it safe for all involved: down your street, in your neighborhood park, around your coffee table, just about anywhere you can think of. This year we are asking you to make the Walk your own.
And while we won’t all be gathered together physically this year, we will gather digitally. Starting at 9:45 a.m. on the Walk to Defeat ALS Facebook page, we’ll be sharing content about this year’s Walk and how all of you are still making a difference for people with ALS and their families. We want to see how you are “Walking Your Way” as well, so when you post about your Walk on social media be sure to use the #ALSWalkYourWay hashtag so we can share it with others.
Continue reading Still Walking for a World without ALS, Even in a World with COVID-19
Podcast hosts do a lot of talking. It’s kind of a job requirement. Long stretches of silence don’t tend to pull in an audience for what is a near entirely audio medium. Still, the best out there strike a balance between talking and listening—really listening—to what their guests and experts have to say. This is especially true when dealing with a topic as sensitive and serious as ALS. It is a balance that Jeremy Holden and Mike Stephenson, hosts of the Connecting ALS podcast, try to strike with each episode.
“Jeremy and I always try to stay out of the way of our guests and their stories,” says Stephenson. “We can only imagine the reality of an ALS diagnosis, so as long as we can provide a platform for members of the community to share and inspire, we hope our listeners find value in each episode.”
Continue reading Asking Questions and Really Listening to the Answers—The Connecting ALS Podcast
Flexibility is always a virtue when serving people with ALS. No two situations are ever the same, and no two people with ALS need exactly the same things to fight the disease. So those who care for people with ALS go into every meeting with a family facing ALS knowing there isn’t a one-size-fits-all solution they’ll be able to provide. And every doctor or nurse who treats a patient with ALS knows finding the right way to meet the needs of an individual patient requires flexibility.
So when the COVID-19 pandemic began impacting the nation and our community, our Care Service team and the staff at the ALS Clinics we support did what they are used to doing: they assessed the situation, they remained flexible, and they found the best solutions possible.
Continue reading Still Finding Solutions—Care Service in the Time of COVID-19
On September 25, 2006, one year after Hurricane Katrina ravaged their home city, the New Orleans Saints took the field at the newly-reconstructed Superdome for one of the most memorable NFL games in franchise history. The team’s safety, Steve Gleason, helped secure their victory when, early in the first quarter, he blocked a punt by the Atlanta Falcons in a play that would one day be immortalized with a statue outside the stadium, a symbol of the city’s rebirth after the devastating storm.
Steve Gleason now lives with ALS and has lost much of his muscle control. The former NFL hero can no longer move or speak and needs assistance to eat and breathe. However, in Gleason’s own words, just as the city of New Orleans “had no plans of fading away quietly and disappearing,” neither does he. Gleason uses a tablet equipped with eye gaze technology and a speech generating device to communicate. The words he types with his eye movements can be selected to be spoken, emailed, and even texted. He can also do things such as pay bills, set a budget, write articles, and much more. In 2019, Gleason even helped launch a wheelchair system that can be controlled using eye gaze technology.
“This technology is life-sustaining, and it allows me to be independent and productive. In a sense, this tablet is a cure for me,” Gleason wrote in 2014, three years after his diagnosis.
Continue reading “You made me want to live.”—How Eye Gaze Technology Can Help Keep Life Fulfilling for People with ALS
No doubt, this is a May like no other. But at the same time, the world continues, and as we mark May as ALS Awareness Month, we take this opportunity to remind our larger community what our ALS community knows all too well: that even with all the uncertainty and unrest caused by COVID-19, ALS doesn’t stop, and neither do we as we work to support our ALS community as they face new and existing challenges.
Because of the need for extreme social distancing during this pandemic, people with ALS and their caregivers have no choice but to take extraordinary precautions and isolate themselves nearly completely. This means they are at risk of losing access to services that are traditionally delivered in person at their homes or in a clinic. Our Care Service team has been working to bridge this connection gap by reaching out by phone and video conference, and by ensuring people with ALS have access to their clinic staff in whatever way makes sense for them. Even as we have been working remotely, our staff has been in constant collaboration around how to best serve our community and how we can prepare for the time when can once again gather together.
But even though we are still mostly at home, you don’t have it sit this ALS Awareness Month out. There are many way you can have an impact on our fight to end ALS.
Continue reading An ALS Awareness Month Like No Other