It seems like it was long ago, but in reality it’s only been a couple of months or so since things were “normal” for most of us. Schools were in session, most of us were actually “going” to work in person, and we were all waiting for spring to arrive.
And then everything got turned upside down. Event after event was either canceled, or postponed, or changed in some way to ensure the safety of all. We’ve all done what we needed to do.
And just like that much that was to be in-person became virtual, including the annual Jim Schoemehl 5K Run, being held this Saturday. The run will still be held—and you can still participate—but it will all be held virtually.
Continue reading A Virtual Story for a Virtual Run—How We Can Still Connect When We Are Apart
In the last year, nearly 450 volunteers lent a helping hand to our Chapter in some way, shape or form. Some gave a few hours of their time, some dozens upon dozens of hours. Some came to us after having had a family member or friend served by our Chapter in the past; others came to us simply out of a desire to make a difference. These volunteers are young and old, from all over our region, and from all sorts of different backgrounds. Each is unique, and each has a story.
April is National Volunteer Month—a month when we recognize the contributions volunteers make when donating their time, talents, and energy to worthy causes. The ALS Association St. Louis Regional Chapter depends on the efforts of our volunteers to help support our many programs, and we are incredibly grateful for all that our volunteers do for our ALS community.
In honor of National Volunteer Month, we are sharing the stories of three chapter volunteers to shine a spotlight on their contributions in the fight against ALS.
Continue reading Not In This Alone—A Spotlight on Our Volunteers and Their Stories
For many of us, among the most difficult parts of the “Stay at Home” orders we face because of the COVID-19 crisis is the isolation. We miss going out wherever we want, doing whatever we want, seeing whoever we want to see. It is unusual, and uncomfortable, and more than a few of us are going more than a little stir crazy because of it.
But for people with ALS, much of this is all too familiar. The isolation and “self-quarantine” we are trying to deal with is every day for them. A member of our staff recently saw a post on Facebook from one of the families we serve that brought this home to us in very personal way. We reached out to them and here, in the words of Summer Nolen, is the story of her father Kent and their family:
Continue reading For Most of Us, Our Current Isolation Will End. For People with ALS, it Is Every Day
Right now, it can be hard to think much about the future. We are locked in on the now, and what current events mean for our family and loved ones. Right now, it can be hard to think that the future, with all the thoughts and worries of everyday life, is coming and that time does not stand still. There will be a spring, summer, and fall. Students of all ages will return to classrooms and campuses, and the financial burdens of college will be there as well.
But for students whose lives have been impacted by ALS, there is the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support the post-high school education for such students. The ALS Association is now accepting applications for year two of the fund. Applications for this year’s scholarship awards, which will be distributed for the fall 2020 and spring 2021 semesters, are being accepted through May 18, 2020.
Continue reading Living the Now but Thinking of the Future—The Jane Calmes ALS Scholarship Fund Kicks Off Year Two
The ALS Association St. Louis Regional Chapter understands that many of those we serve—people with ALS, their families and supporters—may have questions and concerns related to the spread of the Coronavirus, known as COVID-19. We are closely monitoring national government health agency guidance on taking measures to protect our staff and you. Our highest priority is the safety and well-being of people with ALS, their families and caregivers, and our staff.
Continue reading Important Information About Our Chapter and the Coronavirus
This week we continue our “Chapter & Verse” series where we allow you to get to know the people who make up the ALS Association St. Louis Regional Chapter a little bit better. Today we hear from Care Service Coordinator Lori Dobbs, who has been with our chapter for 10 years.
Continue reading Chapter & Verse: Lori Dobbs
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.
Continue reading Community Partner Events Offer Everyone the Chance to Make an Impact
The narrative that nothing gets done in Washington saturates the media, as the does the narrative that bipartisanship is a thing of the past. Regardless of if you are a casual observer of political news or a news junkie, you might guess that everything that happens on Capitol Hill is all out political warfare, all of the time.
If so, you might be happy to learn that just since the beginning of 2020, bipartisan efforts in both the U.S. House of Representatives and the U.S. Senate are taking place that offer a real chance for significant movement in the area of ALS advocacy and ALS research.
Continue reading ALS Cause Gets a Push in Both Houses of Congress
This week is Feeding Tube Awareness Week, and in light of the fact that many people with ALS will have to face the decision of if or when to have a feeding tube placed, we asked Care Service Coordinator Mary Love, who is a registered dietician, some questions about the ins and outs of feeding tubes:
Continue reading What Should You Know About Feeding Tubes?
This week we are starting a new series with the hope of allowing you to get to know the people who make up the ALS Association St. Louis Regional Chapter a little better. We are calling it “Chapter & Verse” because every person’s life is a story. This week we hear from Care Service Coordinator Mary Love, who joined the Chapter last spring.
Continue reading Chapter & Verse: Mary Love