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.Continue reading Your Year-End Gift Has More Impact than You Might Think
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 5th 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:Continue reading Remembering Pat Quinn, and how “Everything can Change in an Instant”
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.Continue reading Navigating Medicare Open Enrollment: What’s the right plan for you?
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.Continue reading Facing Challenges and Finding Solutions—A Family Story for Family Caregivers Month
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.Continue reading Cook for a Cure—Sometimes it’s More Than a Meal, it’s the Cause
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.Continue reading More Encouraging News about AMX0035—And Still time to Sign the Petition to Make this Promising Treatment Available as Quickly as Possible
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.Continue reading Bringing About Real Change Step-by-Step: What it Means to Be an ALS Advocate
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.Continue reading My Upcoming Retirement—Thank You for the Last 10 Years
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.Continue reading Proper Nutrition for People with ALS
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.Continue reading ALS Virtual Town Hall Brings Community Together