ALS CONNECT

The COVID-19 Vaccine—What You Should Know

It is fair to say that there has been much enthusiasm about safe and effective vaccines for COVID-19 being developed quickly and being distributed across the country. It is also fair to say that there has been more than a little confusion about how the vaccines are being distributed, and how and when they will be available to people from various communities, including for people with ALS.

In an effort to provide the most current and reliable information available, the National Organization for Rare Disorders (NORD), in partnership with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, will host a special webinar with leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) to discuss the COVID-19 vaccines with the rare disease community. The webinar is Friday, January 15, from 1 – 1:45 p.m. CT. The webinar is free, and you can register here: https://bit.ly/Vaccine-Webinar.

Hope for the New Year

As we move into 2021 in earnest we once again asked our Board Chair Josh Rogers to share some thoughts on the year ahead. Here is Josh’s message to us all:

Happy new year!

With the full year ahead of us, most of us hold terrific hope that 2021 will be an improvement over 2020.

What a Year It Has Been

There is no doubt, 2020 will be a year not soon forgotten. We all have had our lives turned upside down in ways big and small, and we are all hoping for 2021 to turn things right-side up.

And while 2020 has been for many a year we’d be fine forgetting, there has been much worth remembering for our Chapter and the ALS community. For while 2020 has been a struggle, we are inspired by those who have struggled to overcome the obstacles in the path. And we are reminded that for people with ALS the struggle never ends. ALS does not stop for global pandemics, or for the challenges created by them.

Like so many others, when the scope of the COVID-19 pandemic became clear, our Chapter was forced to reimagine how to provide services to the community we serve. Our Care Service team worked with our partners to find new and different ways to meet the needs of people with ALS. Visits that would normally have been in person now took place over the phone or internet. Here on ALS Connect, we tried to keep you informed about how we and others in our community we meeting these challenges each and every day.

Staying Power—SLU Clinic Celebrates 15 Years as an ALS Certified Treatment Center of Excellence

Time has a way of sneaking by when we aren’t looking; not the day-to-day so much, but the sliding of the calendar from year-to-year. What seemed like just a few years ago suddenly is a decade more in the rearview mirror as we zoom on to what’s next.

Think back to 2005—not that long ago, right? You might think things were not that much different then; not that long ago. You might hop on YouTube to see what happened back then, but if you did that back then, you would have been cutting edge: YouTube wasn’t a thing until February of 2005. And hopefully you were a college student back in 2005 if you want to see what was happening on Facebook, since it didn’t open up to the general public until a few years later. And of course if you were doing any Googling for “what happen in…” back in 2005 you were likely doing it from your desktop, as the first iPhone didn’t come out until 2007.

But while the world is different now as opposed to 2005, some things aren’t. In 2005, the SLUCare ALS Clinic was recognized as an ALS Association Certified Treatment Center of Excellence, and remains so to this day. This certification means that a clinic meets rigorous clinical care and treatment standards, participates in ALS-related research and has successfully completed ongoing comprehensive site reviews. Nationwide, there are only 72 ALS Association Certified Treatment Centers of Excellence.

Your Year-End Gift Has More Impact than You Might Think

December is here and the 2020 holiday season is in full swing! Sure, maybe a bit more of the holiday shopping is being done online, and what would normally be in-person gatherings are now Zoom meetings dotting the calendar. But even in these most unusual circumstances, this time of the year feeds feelings of generosity and fuels a desire to give. And although this holiday season may look different due to the COVID-19 pandemic, holiday giving remains more important than ever.

Remembering Pat Quinn, and how “Everything can Change in an Instant”

Less than a week before Thanksgiving, Pat Quinn, co-founder of the ALS Ice Bucket Challenge, passed away from the disease. His passing follows that of the other Ice Bucket Challenge co-founder Pete Frates, who passed away in December 2019.

It might be tempting to think of Pat’s passing as just another example of how difficult 2020 has been, but when Pat spoke on the 5^th Anniversary of the Ice Bucket Challenge in August 2019, his message was not one of dwelling on our setbacks, but one to embrace the possibilities life offers:

Navigating Medicare Open Enrollment: What’s the right plan for you?

Medicare’s annual open enrollment period for health and drug coverage has begun and will continue through December 7, 2020. This time period allows those eligible to sign up, and those enrolled to change their selected Medicare health/prescription plan for the following year. It can be difficult to navigate, but the decisions you make during this period are critical, and you deserve to understand exactly what’s available.

As we approach the open enrollment deadline, we want to cover some Medicare basics, what this period means for people living with ALS, and resources available to select the right plan for you.

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.