Living the Now but Thinking of the Future—The Jane Calmes ALS Scholarship Fund Kicks Off Year Two

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.

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Important Information About Our Chapter and the Coronavirus

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.

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Living with ALS—A Small Look

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.

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ALS Medicare Resource Line—Help with Getting the Help You Need

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.

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Wishing You a Hopeful New Year

As 2020 begins in earnest with the first full work week, we asked our Board Chair Josh Rogers to share some thoughts on the upcoming year. Here is Josh’s message for us all:

The ringing in of each new year brings with it hope. When the ball drops and fireworks fill the sky on New Year’s Eve, when we hang a new calendar on the wall and open it to January, when we walk through the front door at work on the first business day of the new year, we press the symbolic reset button on life. We put behind us the challenges and neglected resolutions of the year before and welcome with optimism the next 12 months.

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The Year That Was—Looking Back

It’s the time of year where you almost can’t help looking back. In a few short days 2019 will be no more. The year has been one of milestones and new beginnings for us here at the ALS Association St. Louis Regional Chapter, and while we are looking back we wanted to include you and remember what a year it’s been.

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Listening to Learn—ALS Association Community Survey Results

The Dali Lama once remarked: “When you talk, you are only repeating what you already know. But if you listen, you may learn something new.” In that spirit, the national ALS Association undertook a community survey in early 2019 to hear from the community about programs and services that people consider important, reasons why people were not accessing some programs, major challenges, and issues around medications. In listening to the community about their realities, the ALS Association is better able to incorporate real world information in to care services planning activities and to inform priority setting, program outcomes, and program improvements.

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Running and Walking for the Cause—and Pie

First the obvious: You could do worse for a Saturday morning than a scenic run or walk through Kimmswick, Missouri. But that’s not the only reason the quaint, tree-lined streets along the Mississippi River will be busy this Saturday morning. As it has since 2011, a community will gather together in support of and in memory of one of their own. And as in 2011 and every year since, it has continued to help support those with ALS and in the search for new treatments, and a cure.

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Lou Gehrig’s Speech—80 Years Later

The story itself is known to even the casual baseball fan: one of the game’s best ballplayers who had played more games in a row than anyone else, ever, got sick with a fatal disease that forced him to retire from the game he loved. When he retired he gave an eloquent, moving speech. Soon thereafter people started referring to the disease he had by his name: Lou Gehrig’s Disease.

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Unlocking ALS—One Step at a Time

The Walk to Defeat ALS® is a colorful event. Team t-shirts from nearly every color of the rainbow dot the landscape, along with hats, shoes, signs. Color is everywhere.

But returning this year along the route, there will be an additional pop of color—a pop of color with a purpose. In 2018 The ALS Association launched Unlock ALS at Walk events to provide participants with a tangible way to recognize the real reasons they Walk to Defeat ALS. At the walks, participants select a lanyard in one of four colors to represent their connection to ALS. These colors represent:

  • Yellow: I have ALS
  • Blue: I Walk in Honor of Someone with ALS
  • White: I’ve Lost Someone to ALS
  • Red: I Support the Cause and Want to Defeat ALS
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