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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Cook for a Cure—Sometimes it’s More Than a Meal, it’s the Cause

Sure, a lot of us have spent way more time at home in 2020 than we have in years past. And by spending more time at home, some of us have found ourselves in our kitchens more than we are used to. For some, this has been a welcome change. For others, it’s been more of a challenge. But regardless of if you are dealing with a global pandemic or just Tuesday night, there are some questions that are universal. Like: What’s for dinner?

We’ve long known the power of food to bring us together. It is the centerpiece of many family celebrations, part of what we remember about that first date, and part of what we pass down from generation to generation. And it isn’t just families, but communities, that can be brought together by the shared experience of cooking. This year on Saturday, November 21, at 7 p.m., that is the plan behind Cook for a Cure, a first of its kind FREE virtual event. Registration is open now.

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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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CARES Act—Take Advantage Now to Help Your Favorite Charities

The CARES Act has been a topic of much discussion over the last month. Passed in the early days of the COVID-19 pandemic in the United States, the Coronavirus Aid, Relief, and Economic Security (CARES) Act included a number of provisions intended to help America face the economic uncertainty created by the crisis.

And while there is ongoing discussion in Congress about some of the provisions of the CARES Act that have expired or will expire soon, it is worth remembering that the CARES Act included a number of provisions that do not expire until the end of 2020, including many incentives that provide benefits for those looking to make charitable gifts during this time to support non-profit organizations, including The ALS Association.

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Perspectives: Where Were You?

Today’s blog post marks the return of our good friend Gregg Ratliff, who penned the reoccurring series “Perspectives: It’s All in How You Look at it” for us a few years ago. In 2009, Gregg’s wife Nancy was diagnosed with ALS, and he became her full-time caregiver for the next seven years. The Ratliff family turned their grief into action when they started the Kimmswick 5k in 2010, shortly after Nancy’s diagnosis with ALS. 

As we approach the 10th Anniversary Kimmswick 5K in a year that has been like no other for us all, Gregg offers his perspective on how momentous events impact all of us, and how the Kimmswick 5K continues to make a difference in the lives of people with ALS. Thank you Gregg for sharing your thoughts and memories with us!

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An ALS Awareness Month Like No Other

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.

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Compassion Will See Us Through—Jane’s Angel Fund Provides Financial Relief to ALS Families in Need

When Scott Lato was diagnosed with ALS on March 29 of last year, it wasn’t long before he and his family realized that certain aspects of their home had become very limiting to him—and provided additional challenges for his caregivers—as his ALS symptoms continued to progress. However, with three boys at home aged 9, 11, and 18, he and his wife Bernadette, both in their 40s, didn’t have the financial ability to suddenly transform their house.

For many families living with ALS, this situation is all too familiar. ALS does not only devastate an individual physically, it can quickly overwhelm a family financially. But would the Latos really have to choose between financial stability for their family and Scott’s ability to access basic needs in his own home?

Thanks to Jane’s Angel Fund, they did not.

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Community Partner Events Offer Everyone the Chance to Make an Impact

The human instinct to gather is ingrained, it is part of us and who we are. We gather as families, as communities, as friends. We gather in happiness and in sadness. We gather to mark milestones and for new beginnings. And sometimes we gather to make a difference.

In our area and in the region we serve, people gather each year in support of the ALS Association St. Louis Regional Chapter for what we call “Community Partner Events,” a chance for ordinary people to make an extraordinary impact in the lives of people with ALS in our community. Last year, more than 30 community partner events were held in support of the cause.

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Year End Giving That Isn’t Just Impactful, But Meaningful

Thanksgiving has passed, December is here and the holiday season is suddenly in full swing. Between holiday gatherings, shopping, wrapping presents, cooking, and maybe one or two—or more—Hallmark movies, the most wonderful time of year can feel, well, mostly overwhelming. On top of it all, there seems to be a big push for donations by almost every charitable organization you’ve ever heard of.

It’s not your imagination. The reality is that the end of the year is a very important time for nonprofit organizations. Nearly a third of annual charitable giving happens in November and December, causing organizations to rely heavily on donations made during this time to fulfill their mission. When you make a year-end gift, you help nonprofits like The ALS Association provide their core services, things like caregiver relief, nutritional supplementation and equipment loan. Additionally, you could allow for additional or new services to unfold, perhaps something innovative like a robotic arm or a feeding machine. Just as importantly, you help sustain the future, allowing the organization to be positioned successfully in a new calendar year, so that all services to people with ALS remain free of charge and needs are met to the fullest extent.

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