The COVID-19 Vaccine—What You Should Know

It is fair to say that there has been much enthusiasm about safe and effective vaccines for COVID-19 being developed quickly and being distributed across the country. It is also fair to say that there has been more than a little confusion about how the vaccines are being distributed, and how and when they will be available to people from various communities, including for people with ALS.

In an effort to provide the most current and reliable information available, the National Organization for Rare Disorders (NORD), in partnership with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, will host a special webinar with leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) to discuss the COVID-19 vaccines with the rare disease community. The webinar is Friday, January 15, from 1 – 1:45 p.m. CT. The webinar is free, and you can register here: https://bit.ly/Vaccine-Webinar.

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Hope for the New Year

As we move into 2021 in earnest we once again asked our Board Chair Josh Rogers to share some thoughts on the year ahead. Here is Josh’s message to us all:

Happy new year!

With the full year ahead of us, most of us hold terrific hope that 2021 will be an improvement over 2020.

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What a Year It Has Been

There is no doubt, 2020 will be a year not soon forgotten. We all have had our lives turned upside down in ways big and small, and we are all hoping for 2021 to turn things right-side up.

And while 2020 has been for many a year we’d be fine forgetting, there has been much worth remembering for our Chapter and the ALS community. For while 2020 has been a struggle, we are inspired by those who have struggled to overcome the obstacles in the path. And we are reminded that for people with ALS the struggle never ends. ALS does not stop for global pandemics, or for the challenges created by them.

Like so many others, when the scope of the COVID-19 pandemic became clear, our Chapter was forced to reimagine how to provide services to the community we serve. Our Care Service team worked with our partners to find new and different ways to meet the needs of people with ALS. Visits that would normally have been in person now took place over the phone or internet. Here on ALS Connect, we tried to keep you informed about how we and others in our community we meeting these challenges each and every day.

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Your Year-End Gift Has More Impact than You Might Think

December is here and the 2020 holiday season is in full swing! Sure, maybe a bit more of the holiday shopping is being done online, and what would normally be in-person gatherings are now Zoom meetings dotting the calendar. But even in these most unusual circumstances, this time of the year feeds feelings of generosity and fuels a desire to give. And although this holiday season may look different due to the COVID-19 pandemic, holiday giving remains more important than ever.

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Facing Challenges and Finding Solutions—A Family Story for Family Caregivers Month

We know the life of a caregiver for a person with ALS is not easy. That is not at all to say that it isn’t incredibly rewarding, but it is not easy. The same thing might be said, but for completely different reasons, about being a small business owner. Sure, that too can be rewarding, but few if any small business owners would describe it as easy.

But what if you combined the two, and in combining the two you were able to enhance both roles, all while facing a global pandemic? That would be something you might need a personal trainer to have the stamina to face. And that, it turns out, is kind of how we got here in the first place.

November is National Family Caregivers Month, a time when we make a point to recognize those who more often than not don’t seek recognition. Those who often put the needs of others before their own. For those in our ALS community, it is a time to remember that ALS is a disease that challenges the whole family in ways unique to each family, but where solutions are unique to each family as well, like for the Swinnen’s.

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ALS Virtual Town Hall Brings Community Together

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.

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Assessing the Financial Burden of ALS—FOCUS Survey Results

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.

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New Normal, New Possibilities—Swing for a Cure Virtual Program and Auction

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.

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We Can’t Wait

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.

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In Memorial—Why We Walk

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.

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