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
Continue reading Building the Blocks of Congressional Action via ALS Advocacy—One Story at a Time
It’s been over a year now since I’ve been diagnosed with ALS. Has my life changed? Absolutely! And a huge chunk of it has changed for the better! But it isn’t only about me; it’s all about family and friends—and it turns out there are lots of them!! Here are some of the wonderful life-changing things that have happened since my diagnosis, and some of them likely wouldn’t have occurred:
Continue reading Craig Kramer: Why I Walk
From the outside, research can seem like an endless process.
As much as we all yearn for the “AH HA!” moment of discovery, more often than
not the gains from any sort of research are incremental. Not so much finding a
needle in a haystack as a slow, methodical, documented labeling of this piece
of hay, then this piece, then this piece….As Thomas Edison said about the
process of researching and creating the lightbulb: “I have not failed 10,000
times. I have not failed once. I have succeeded in proving that those 10,000
ways will not work. When I have eliminated the ways that will not work, I will
find the way that will work.”
ALS research has proven to be just such a challenge to the
best minds in the medical and scientific communities. But recent advances are
creating excitement about new ideas and opportunities, aided in no small part
by the influx of funding created by the Ice Bucket Challenge. With all that is
going on, we wanted to take a moment to look at what is happening in ALS
research—to see what is new, what is promising, and what the future may hold.
Continue reading ALS Research—The Pace of Discover Is on the Rise
By Saundra Stewart
ALS is unique in that no two cases start exactly the same, and no two cases end exactly the same. Don made some decisions early on in his illness (no feeding tube and no vent) that affected the way I cared for him. Your situation will be different, but let me share what worked for us.
There’s so much involved in caring for an ALS patient that I often thought there just weren’t enough hours in the day to do it all and do it well. So, I used everything I could to make my life easier. Don made it easy, because he wasn’t afraid to try new things, if I thought it was worthwhile. I kept my eyes and ears open for new gadgets or methods of operation that would lighten my work load, but still get the job done effectively. Here are some of the things I found:
Continue reading Walk a Crooked Path: Make It Easy on Yourself
The care services team at the St. Louis Regional Chapter are the forefront of knowledge and information on ALS and what it looks like to live with the disease in our region. They answer questions from people with ALS and their families on a regular basis as they meet with families at clinics or during home visits. A few months ago, they answered some common questions they receive. Here is Part 2 of those FAQs.
Continue reading Care Services FAQ, Part 2
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:
Continue reading Unlocking ALS—One Step at a Time
- 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
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.
Continue reading You Are Part of Finding a Cure for ALS—By Being an Advocate