Bringing About Real Change Step-by-Step: What it Means to Be an ALS Advocate

With the 2020 election looming, it seems every other ad highlights a different elected official in either a positive or negative light. But when we look beyond the talking points that dominate our screens, we often find that elected officials at the federal, state, and local level are not only open to, but eager to hear the thoughts of the constituents they are elected by. By becoming an ALS advocate today, you can make your thoughts known to your elected leaders and advocate for changes in laws and regulations that affect thousands of people living with ALS and their families.

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My Upcoming Retirement—Thank You for the Last 10 Years

A personal message from our President and CEO Maureen Barber Hill:

To Our ALS Community,

I am writing to let you know that I will be retiring as President and CEO of our Chapter on Feb. 12, 2021, bringing my 10 years with this incredible organization to a close. Our Board of Directors has named my esteemed colleague Katie McGovern, who many of you know as our Development Director, as my successor, and I couldn’t be more pleased with that decision. You can read the news release here.

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Proper Nutrition for People with ALS

Keeping up with the calendar can seem like a daunting task even when just thinking about the normal flow of the year. Halloween is right around the corner, and even thought it doesn’t seem possible Christmas decorations are up for sale already. Sure, sometimes the days seem to creep by, but at the same time the pages of the calendar can seem to fly off. Add to that the various “awareness” weeks and months and you need a calendar just to keep track of the calendar, if that makes any sense.

But there are times when we should stop and consider that many of these issues we are asked to be “aware” of are really important, some even more so to people with ALS and their families. So as we note that this is Malnutrition Awareness Week, we asked Care Service Coordinator and Registered Dietitian Mary Love to share some thoughts on nutrition for people with ALS.

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ALS Virtual Town Hall Brings Community Together

In a lot of ways, the origins of the “town hall” meeting are uniquely American. Sure, community gatherings have been happening from the time there have been communities to gather, but since the early days of colonial America, the gathering of a group of concerned individuals to be updated on current events has been a time honored tradition that persists to this day across the country. The idea has become so much a part of us that we don’t think twice that “town hall” can easily refer as much to a meeting as it does to a building.

But just because the town hall concept is old doesn’t mean it has stayed the same, and in 2020 when nothing seems normal the concept has had to evolve even more. What might have in the past been in-person gatherings have become virtual, expanding the scope and reach even further. But the basic idea of gathering a community to be updated on current events remains.

In just such spirit, our Chapter hosted a virtual town hall meeting in September to discuss the current state of ALS care services, research, and advocacy. Members of our community were able to hear from experts in these areas and ask question to the speakers. The full 90 minute recording is available for all to view.

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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.

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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.

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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.

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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.

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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.

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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.

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