ALS CONNECT

New Drug Treatment Shows Significant Benefit for People with ALS

These days, it seems everything is “news.” Or at least there needs to be enough “news” to fill the 24 hour news channels, your Facebook and Twitter feeds, and who knows how many website devoted to covering the “news.”

But in a time when everything claims to be “news,” it can be hard to tell when something genuinely newsworthy occurs. When we really ought to break out the “Breaking News” banners and pay attention.

For the ALS community, just such an event took place earlier this month, when the New England Journal of Medicine published encouraging clinical trial results showing that Amylyx Pharmaceuticals’ AMX0035 brought statistically significant benefit to people living with ALS. The study showed that AMX0035 decreased the rate of decline in the Revised ALS Functional Rating Scale (ALSFRS-R). The trial included 137 people with ALS and was conducted across 25 top medical centers through the Northeast ALS (NEALS) consortium.

People with ALS who received AMX0035 performed 2 points better on the ALSFRS-R compared to those who received the placebo. This is a statistically significant result, and in the real world could mean the difference between a person with ALS being able to feed themselves versus being fed, or the difference between needing a wheelchair versus not needing one.

Not in This Alone—New Virtual Support Group Offers Sense of Community

Though the hardships of ALS can create mental health challenges and isolation, it may help to find support and strength from people who are going through or have gone through similar experiences. During this COVID-19 pandemic, maintaining a real-time connection with others has become all the more critical for our emotional health, and a support group provides an opportunity for people to share personal experiences and feelings, coping strategies, and firsthand information.

Begun in July of this year, our Chapter’s Virtual Support Group exists to help keep people with ALS and ALS caregivers connected emotionally in a time where we are not able to meet in person. Through this virtual community, we hope to help everyone feel closer.

Assessing the Financial Burden of ALS—FOCUS Survey Results

The emotional costs of ALS put a strain on every family who must face the disease. But even while a family faces these challenges, the financial costs of ALS are there as well. The cost to a person with ALS averages around a quarter of a million dollars over the course of the disease. That cost comes in the form of piles and piles of bills, insurance forms, and more forms, and more bills. And while each family’s financial challenges are different, the reality is that these challenges make an already difficult situation that much more so.

To better understand these challenges, The ALS Association and its partners made “understanding the insurance needs and financial burden” of people with ALS the topic of the first ALS Focus survey conducted earlier this year, the results of which are now available.

Communication Is Key—Speech Language Pathologists Find Ways to Help

Humans have an innate need to communicate. And our use of language is unique in the animal kingdom. It is, to some extent, what makes us human. It is among the signposts in our evolution. Parents remember the where and when of a child’s first words. Before there were books—or even written languages—stories, wisdom, and culture was passed from generation to generation through the spoken word.

For people with ALS and their families, keeping communication going is very important to everyone. While no two cases of ALS are the same, many people with ALS will encounter difficulties with speaking as the disease progresses, with many losing the ability to speak entirely. These challenges with speech and communication can progress quickly or slowly, and are among the emotional taxing issues a family living with ALS must face.

Given the importance of communication to us as humans, finding ways to keep communication going is an important part of treatment for a person with ALS. While doctors and ALS Association care service coordinators are an important part of that process, often times the expertise of speech language pathologist (SLP) is invaluable.

New Normal, New Possibilities—Swing for a Cure Virtual Program and Auction

Yep, we’re still here. Even while some parts of the country have reopened, many of us still find ourselves working from home, and many are facing the reality of the school year starting up as the last one ended, with distance learning. We are still facing uncertainties around health, and jobs, and just life in general. There are still many, many days when this “new normal” doesn’t feel very normal at all.

But one thing many of us have gotten better with during this unusual time is finding ways to connect that we hadn’t thought of, or used sparingly before. Grandparents are scheduling Zoom meeting with their grandkids. Virtual happy hours are connecting groups of friends that haven’t had an actual in-person happy hour in years. We can’t see as many people as we used to, but we are “seeing” some people we maybe wouldn’t have thought to connect with if things were “normal.”

And there are some opportunities to connect that have been expanded with the ability to gather in-person taken away. An example? How about our Swing for a Cure program and auction.

CARES Act—Take Advantage Now to Help Your Favorite Charities

The CARES Act has been a topic of much discussion over the last month. Passed in the early days of the COVID-19 pandemic in the United States, the Coronavirus Aid, Relief, and Economic Security (CARES) Act included a number of provisions intended to help America face the economic uncertainty created by the crisis.

And while there is ongoing discussion in Congress about some of the provisions of the CARES Act that have expired or will expire soon, it is worth remembering that the CARES Act included a number of provisions that do not expire until the end of 2020, including many incentives that provide benefits for those looking to make charitable gifts during this time to support non-profit organizations, including The ALS Association.

Perspectives: Where Were You?

Today’s blog post marks the return of our good friend Gregg Ratliff, who penned the reoccurring series “Perspectives: It’s All in How You Look at it” for us a few years ago. In 2009, Gregg’s wife Nancy was diagnosed with ALS, and he became her full-time caregiver for the next seven years. The Ratliff family turned their grief into action when they started the Kimmswick 5k in 2010, shortly after Nancy’s diagnosis with ALS.

As we approach the 10th Anniversary Kimmswick 5K in a year that has been like no other for us all, Gregg offers his perspective on how momentous events impact all of us, and how the Kimmswick 5K continues to make a difference in the lives of people with ALS. Thank you Gregg for sharing your thoughts and memories with us!

Tips for Enduring the Long, Hot Summer

We are well into the dog days of summer, and here in the Midwest it has already been a hot one, with few prospects for cooler days on the horizon. Even a few minutes outside can be draining, and the prospect for fatigue is real for everyone, especially for people with ALS.

“As a long-time St. Louisan I have lived and breathed these hot and humid summers for many years, just a little more than 40! While I should be used to them by now it always seems to surprise me when spring turns to the full on summer and the air gets heavy and thick,” says Anna Zelinske, ALS Association St. Louis Regional Chapter Director of Programs and Services for Patient Care. “I think we all need to be sure we pay attention to our hydration and take the heat and humidity seriously.”

The best advice for everyone to beat the heat is pretty clear—avoid it when possible. Staying inside, ideally with air conditioning, when heat advisories are posted is ideal. But for many of us, including many of those with ALS, that isn’t always entirely possible. So if you cannot entirely avoid the heat, here are some suggestions for not allowing something uncomfortable to turn into something dangerous.

We Can’t Wait

We are all tired. Some of us are tired of working from home. Some of us are tired of waiting to get to work again. We are tired of cooking and doing the dishes for what seems like the millionth time. We want our kids to go back to school. We want to hug our friends. We want things to feel normal again.

We keep thinking about “when this is over….”

But ALS has no respect for COVID-19. It is not waiting patiently on the sidelines while we deal with this new interloper. Every 90 minutes, someone is either diagnosed with ALS or dies from the disease. While we are waiting for things to go back to normal, a person with ALS must face the fact that their average life expectancy is 2 to 5 years, regardless of how long this other pandemic lasts.

All of this is why we can’t wait. We can’t wait to find new treatments. We can’t wait to find a cure.

ALS Biomarker Research — One More Reason to Hope

The ALS Association funds millions of dollars in research every year, in a variety of scientific focus areas critical to advancing the search for treatments and a cure for ALS. In the nearly 150 years since ALS was first described in 1874, the search for new treatments and a cure has been frustratingly slow. However, the last decade has seen promising acceleration in progress, and in the last few years, five genes related to ALS have been identified. The ALS Association is currently funding a total of 169 active research projects in 16 different focus areas, and for everyone involved, critical discoveries cannot come soon enough. The promise shown in ongoing biomarker research gives reason for hope.