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
We have at times here attempted to provide a look at what living with ALS looks like. This is at times daunting as every person with ALS experiences the disease in their own unique way. What is common for all people with ALS is that there are challenges to overcome. These challenges are sometimes small, and sometimes monumental. But they are there—day-in, day-out—and must be met.
Continue reading Living with ALS—A Small Look
We’ve written before here about how there are real, tangible discovers being made in ALS research, but for everyone involved the pace of discovery can’t move fast enough. As such, when a new idea presents itself that has a real chance to move the needle it worth noting. Such an idea is taking shape right now with the first ALS platform trial at The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital.
Continue reading Adding to Research Momentum—The First ALS Platform Trial Takes Shape
Sometimes getting the help you need starts with figuring out what help is out there. This is never more true that when you are dealing with a government program, like Medicare. What are the resources? Are you eligible? How do you apply? How do you know what information is reliable?
Now, for people with ALS and their families, there is a reliable, trusted resource they can turn to, free of charge. In partnership with Patient Advocate Foundation, the ALS Association has recently introduced a new resource for the ALS community: The ALS Medicare Resource Line.
Continue reading ALS Medicare Resource Line—Help with Getting the Help You Need