ALS Cause Gets a Push in Both Houses of Congress

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.

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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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Building the Blocks of Congressional Action via ALS Advocacy—One Story at a Time

If you are an average American, you probably hold a low option of Congress. It has been more than 10 years since overall congressional approval ratings have inched above 30 percent, and during most of that time its rating has actually been somewhere below 20 percent. Among the reasons given for the lack of support is that “nothing gets done.”

But if you look beyond the hot button issues that dominate cable news, you often find that individual members of Congress and their staffs are not only open to, but eager to hear the thoughts of their constituents. They are, after all, elected by just these constituents, and listening to what they have to say is in a very real sense what they were elected to do.

As such, each June people with ALS, their families, and those who advocate for them gather in Washington, D.C., to learn about the latest ALS research, network, and visit Capitol Hill to share their stories with members of Congress and lay the groundwork for legislative victories. To be sure, the trip is not an easy one, especially for people with ALS. But many made the journey, and on Tuesday, June 11, the hallways of Capitol Hill were full with those advocating for people with ALS. In all, members of the ALS Association St. Louis Regional Chapter, Chapter board members, and local residents with ALS met with the offices of 11 representatives or senators from Missouri and Illinois.

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You Are Part of Finding a Cure for ALS—By Being an Advocate

The role we can play as individuals in finding new treatments—and a cure—for ALS can seem small. Most of us aren’t world class medical researchers. Most of us don’t have hundreds of thousands of dollars to donate to funding those doing that research. Our role in fighting ALS seems minor by comparison, but it isn’t. By adding our voices to the chorus of voices advocating for people with ALS we can—and do—play an important part of the fight for a cure.

As we continue with ALS Awareness Month, we wanted to look at ALS advocacy and explore what is being done, what can be accomplished, and what you can do.

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Making Your Voice Heard on Capitol Hill

On March 13 and 14, ALS advocates went to Capitol Hill to speak with representatives about legislation and policies intended to improve the lives of people with ALS. ALS advocates Mark Calmes and Tara Klucker had preliminary meetings with key legislators that are pertinent to our legislative priorities.

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Communities Join Together to Support People with ALS and Fight for a Cure

A community partner event is a fundraising activity that is organized and managed by a family, group or individual who is acting independent of The ALS Association St. Louis Regional Chapter. This August, five community partner events took place across eastern Missouri and central and southern Illinois, ranging from a tractor pull, an awareness walk before a baseball game, and two different golf tournaments. There was even an ALS Ice Bucket Challenge event earlier this month, four years after the original Ice Bucket Challenge swept social media and national headlines. This August, and every August until we find a cure, reminds us that great things happen when we come together. With all of the extra events throughout the region it was even more exceptional.

Each event has a huge impact on the community and helps people with ALS and their families in several ways. Here are five reasons community partner events are a great way to get involved in the fight against ALS.

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ALS Advocates Will Make Their Voices Heard

Tomorrow, more than five hundred advocates will gather on Capitol Hill in Washington, D.C. for National ALS Advocacy Day.  ALS advocates from all around the country will meet with members of Congress to share their stories and educate legislators about the importance of continued funding for ALS research and patient care.

Through the efforts of ALS Advocates,  more than $1 billion in federal funding has been generated for ALS-specific research since 1998. In fact, ALS Advocacy efforts have been responsible for many legislative victories, including securing veterans benefits, enacting the ALS Registry Act, appropriating funding for caregiver relief and the ALS Research Program at the Dept. of Defense, and passing the Medicare waiver.

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