Get Ready for Game On!—And You Can Play Along!

If you are listing off all-time favorite TV game shows, Family Feud is certain to come up sooner rather than later in the conversation. And if you are listing off game shows that seem the most fun to be on, Family Feud probably comes up even sooner. Since the beginning way back in the 1970s, it just seems like, well, fun. Right?

But realistically, few if any of us will ever get the chance to be ON Family Feud. But that doesn’t mean you can’t find a way to join in the fun. And if that fun just so happens to support the fight to end ALS, so much the better.

Enter Game On!—The ALS Association’s premier dinner event, combining fun and fundraising in one elaborate extravaganza. This energetic party will continue the momentum of the Ice Bucket Bash, and positively impacting the future of the ALS landscape. The event is Friday, November 12, at historic Union Station.

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“I chose to use my situation as motivation…”—Pattie Hamlin Honored with ALS Association Hero Award

Like many people, Pattie Hamlin took part in the ALS Ice Bucket Challenge in 2014. And like many people, she did it in support of the cause but without a deep connection to the disease. But that all changed just a few years later.

Pattie Hamlin was diagnosed with ALS in 2016, but she did not let that slow her down.

“Shortly after being diagnosed I began researching and discovered how devastating this disease really is,” Pattie says. “In those early months I struggled emotionally with the outlook that was now my reality. Eventually, I chose to use my situation as motivation to try and make a difference for the future of ALS.”

For her tireless efforts in support of our Chapter and the ALS Association as an ALS advocate, fundraiser, and ambassador, Pattie was honored with the Hero Award virtually during the ALS Association 2021 Leadership Conference in February.

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I Look Forward to Taking This Journey With You

As she moves into her new role as our president and CEO, Katie McGovern wanted to share some personal thoughts with all of you in our ALS community:

Well, here it is. The first week on the job!

To say this week, and the weeks leading up to this, have come with a mix of emotions is an understatement. While there is great excitement and energy for what is to come, there certainly isn’t a lack of nerves. I have big shoes to fill upon Maureen Barber Hill’s retirement, and there are significant goals to achieve.

While this transition has personal elements, I am acutely aware that this opportunity really isn’t about me. We, the ALS community, are at a pivotal point in our journey, embarking on our next chapter together. Throughout this chapter, I believe we will see many things unfold, resulting in transformative progress for people affected by ALS and their families.

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Learning from Those Who Know—Latest ALS Focus Survey Needs to Hear from Current or Past Caregivers

Making assumptions can lead to trouble, but we all do it from time to time. You might assume that since the weather was nice yesterday it will be so again today, but if you don’t bother to find the weather forecast you may end up with some soggy clothes at the least. Annoying to be sure, but not really that big of a deal.

However, assumptions about the impact of a disease as serious as ALS can have far reaching implications. ALS researchers around the world work hard to challenge assumptions and find the facts behind the causes of ALS and how to best treat—and someday cure—the disease. But even in assessing the impact of ALS on day-to-day living, there is the danger of assuming.

The goal of the ALS Focus survey project is to move beyond those assumptions. It is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and burdens. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the whole ALS community can benefit.

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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.

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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.

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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.

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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 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:

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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.

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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.

Continue reading My Upcoming Retirement—Thank You for the Last 10 Years