ALS CONNECT

Lou Gehrig Day Shines a Light on ALS Across Major League Baseball

It started, as so many ideas do these days, with a text. “(D)o you think it would [be] possible and appropriate to approach mlb with doing something with Lou Gehrig like they’ve done Jackie Robinson?” songwriter Bryan Wayne Galentine, who had been diagnosed with ALS two years earlier, texted friends whom he’d met through the tight-knit ALS community on June 24, 2019. From that the idea was born.

Surrounded by Love—A Former Volunteer Shares Her Family’s Journey with ALS

Jan Schmitz Mathew hadn’t really set out to write a book, but she is certainly comfortable with expressing herself through the written word. So when her father Roger began experiencing the symptoms of ALS in the fall of 2012, and after he was diagnosed in March 2013, she turned to writing. Rather obviously, at the time she was focused on her father, her mother, and the rest of her family—what was right in front of them. Her dad’s journey with ALS ended in October of that year, and while her writing continued, it was not yet time to think that maybe, just maybe, her experiences could have meaning for the larger ALS community.

Dispatches From a Former Caregiver—Trying to Get on the Right Track, and the Right Train

Today’s blog post is the second of in a recurring series from our friend Scott Liniger, who was an ALS patient caregiver for his partner Tammy Hardy for six years. In his series “Dispatches From a Former Caregiver” Scott hopes to explore the parts of his and Tammy’s story that tend to the, shall we say, more irreverent side of their journey.

Scott’s story today picks up shortly after his last Dispatch. After some additional drama with rental cars, Scott, Tammy and their friend Chris have made their way to the Milan train station as the head to Lyon, France. At least, that’s the plan…

“Any Small Way I Can”—The “Why” Story of One Volunteer

The decision to volunteer is often an intensely personal one. Some decide to volunteer out of a sense of wanting to give back to the community after a long career. Others feel an affinity for an organization’s mission. Still others seek out opportunities that might inspire them creatively or for the opportunity to learn new skills. For some, it is an opportunity to meet new people and make new friends. This list goes on, and at the end of the day there is a story of “why” for every volunteer.

April is National Volunteer Month, a chance for us to say thank you to everyone who chooses to volunteer their time and talents to the cause of serving our ALS community and working towards the goal or creating a world without ALS. Still, for our volunteers and our organization—as for the entire world—the last year has been strange and challenging. The safety protocols the pandemic has required, especially for people with ALS and their families, has limited the volunteer opportunities available. As we all strive to return to something approaching “normal,” we are reminded that the passion of those wanting to help has not lessened, it has merely been directed differently.

Finding a Way—Occupational Therapists Are the Problem-Solvers of the Multi-Discipline ALS Treatment Team

There are times, for whatever reason, when the English language can be confounding. The examples of everywhere. We drive on a parkway and park on a driveway. This can apply to professions as well. Take for example, occupational therapy. That has to do with work, right? After all, “occupation” is right there in the name. And that’s correct, but only to an extent, because the role of an occupational therapist is that and so much more. In broad terms, occupational therapy focuses on a person’s ability to perform activities of daily living—to live life to its fullest. For people with ALS, an occupational therapist (or OT) is there to help patients maintain their independence for as long as possible as well as to improve their quality of life. The work an OT does can take on many forms as we’ll soon see, but in some ways their role can be summed up by this quote from the movie Patch Adams: “You treat a disease: you win, you lose. You treat a person, I guarantee you win—no matter what the outcome.”

April is Occupational Therapy Month, and what better way to mark the occasion than to hear from someone who knows the role of an OT inside and out: our Associate Director of Care Services Melissa Smith, who just so happens to be a licensed OT.

Dispatches From a Former Caregiver—Have You Heard Venice has A LOT of Canals?

Today’s blog post is the first of in a recurring series from our friend Scott Liniger, who was an ALS patient caregiver for his partner Tammy Hardy for six years. In his series “Dispatches From a Former Caregiver” Scott hopes to explore the parts of his and Tammy’s story that tend to the, shall we say, more irreverent side of their journey.

Tammy Hardy lost her battle with ALS in 2008. She was 39 years old. She was diagnosed with ALS six years earlier, at the age of 33. After her diagnosis, she had a cadre of caregivers, including her sisters and brother, her parents, her partner Scott Liniger, and his parents and family. Since her death, Scott has been a member of the St. Louis Walk To Defeat ALS committee, and participates and fund raises for Walk Team Tammy Hardy, along with Tam’s sisters, Kelly and Keri (and lots of family and friends).

“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.

The Fight Never Stops—ALS Advocates Push for Increased Funding from 117th Congress

Even with all the headline-grabbing stories that dominate cable news and your news feed, much of what happens in the federal government follows a predictable pattern. This seemingly mundane work of setting priorities, planning budgets, and allocating funds doesn’t tend to excite many journalists unless something goes awry, but when all is said and done this process determines how most of your tax dollars get spend, and on what.

And so it is with the annual appropriations process that provides funding for key government programs. While other flashy topics attract more attention, the ALS Association and our network of ALS advocates are working to protect and expand federal funding for ALS research and fighting for public policies that will accelerate the search for treatments, and a cure. Just this week, a “Dear Colleague” letter has begun circulating in the U.S. House of Representatives, asking members to signal their support for the funding requested in the fight against ALS.

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.

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.