ALS CONNECT

Facing Challenges and Finding Solutions—A Family Story for Family Caregivers Month

We know the life of a caregiver for a person with ALS is not easy. That is not at all to say that it isn’t incredibly rewarding, but it is not easy. The same thing might be said, but for completely different reasons, about being a small business owner. Sure, that too can be rewarding, but few if any small business owners would describe it as easy.

But what if you combined the two, and in combining the two you were able to enhance both roles, all while facing a global pandemic? That would be something you might need a personal trainer to have the stamina to face. And that, it turns out, is kind of how we got here in the first place.

November is National Family Caregivers Month, a time when we make a point to recognize those who more often than not don’t seek recognition. Those who often put the needs of others before their own. For those in our ALS community, it is a time to remember that ALS is a disease that challenges the whole family in ways unique to each family, but where solutions are unique to each family as well, like for the Swinnen’s.

Cook for a Cure—Sometimes it’s More Than a Meal, it’s the Cause

Sure, a lot of us have spent way more time at home in 2020 than we have in years past. And by spending more time at home, some of us have found ourselves in our kitchens more than we are used to. For some, this has been a welcome change. For others, it’s been more of a challenge. But regardless of if you are dealing with a global pandemic or just Tuesday night, there are some questions that are universal. Like: What’s for dinner?

We’ve long known the power of food to bring us together. It is the centerpiece of many family celebrations, part of what we remember about that first date, and part of what we pass down from generation to generation. And it isn’t just families, but communities, that can be brought together by the shared experience of cooking. This year on Saturday, November 21, at 7 p.m., that is the plan behind Cook for a Cure, a first of its kind FREE virtual event. Registration is open now.

More Encouraging News about AMX0035—And Still time to Sign the Petition to Make this Promising Treatment Available as Quickly as Possible

In September, we shared with you the exciting news that AMX0035, a trial ALS treatment drug developed by Amylyx Pharmaceuticals that had just completed the phase 2 trial, showed a statistically significant benefit to people living with ALS. This promising news lead The ALS Association and I AM ALS to launch a petition asking the FDA and Amylyx to work together to make AMX0035 available to the ALS community as soon as possible.

And while the news of a possible significant benefit to people living with ALS has created much optimism in the ALS community, the story doesn’t end there. All patients who completed the Phase 2 study were eligible to enroll in an “open label extension” (OLE) study to receive AMX0035 with no placebo comparator for up to an additional 30 months. Out of the 98 participants who were eligible for OLE enrollment, 92 percent (or 90 participants), opted to enter the OLE.

The primary goal of an OLE is to gather information about safety and tolerability of the new drug in long term, day to day use outside the trial environment, but they also can and do provide information on the effectiveness of the drug being tested. In this case, those findings make an even more compelling case for providing AMX0035 to the ALS community while Phase 3 trials take place, not after.

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.

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.

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.

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.

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.