In the past, ALS Advocacy Day on Capitol Hill has been a frenetic affair. It almost has to be when groups of ALS Advocates from across the country descend on the Capitol with maps in hand, ready to weave the halls and go from meeting to meeting with Senators, Representatives, and staff to tell the story of people with ALS and how Congress can help. It is a fruitful, yet exhausting, day for all involved.
This year, however, the knock on a door was replaced by the ring of the phone. For the safety of all involved, people with ALS, chapter staff, and board members couldn’t travel to Washington D.C. for the day. As with much in our world today, the visits had to be done remotely.
Continue reading “This Is Where I Need to Be Right Now”—Virtual ALS Advocacy Day Still Makes an Impact on Congress
No doubt, this is a May like no other. But at the same time, the world continues, and as we mark May as ALS Awareness Month, we take this opportunity to remind our larger community what our ALS community knows all too well: that even with all the uncertainty and unrest caused by COVID-19, ALS doesn’t stop, and neither do we as we work to support our ALS community as they face new and existing challenges.
Because of the need for extreme social distancing during this pandemic, people with ALS and their caregivers have no choice but to take extraordinary precautions and isolate themselves nearly completely. This means they are at risk of losing access to services that are traditionally delivered in person at their homes or in a clinic. Our Care Service team has been working to bridge this connection gap by reaching out by phone and video conference, and by ensuring people with ALS have access to their clinic staff in whatever way makes sense for them. Even as we have been working remotely, our staff has been in constant collaboration around how to best serve our community and how we can prepare for the time when can once again gather together.
But even though we are still mostly at home, you don’t have it sit this ALS Awareness Month out. There are many way you can have an impact on our fight to end ALS.
Continue reading An ALS Awareness Month Like No Other
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
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.
Continue reading Wishing You a Hopeful New Year
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
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
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.
Continue reading Making Your Voice Heard on Capitol Hill
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.
Continue reading Communities Join Together to Support People with ALS and Fight for a Cure
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.
Continue reading ALS Advocates Will Make Their Voices Heard
An important part of our mission at the ALS Association is to advocate for changes in laws and regulations that affect thousands of people living with ALS and their families. ALS advocacy has resulted in policies that not only advance the search for treatments and a cure, but has also helped to ensure that people living with ALS have access to the healthcare they need and deserve to maintain a higher quality of life. ALS advocates from around the country have been instrumental in passing legislation that expanded veteran’s benefits, increased national data collection through the ALS Registry, and improved insurance and disability coverage for people with ALS. More than $950 million in federal funding has been generated for ALS-specific research since 1998.
Continue reading ALS Advocacy: Why It’s Important and What You Can Do to Make a Difference