ALS CONNECT

In Memoriam: Remembering Those We’ve Lost to ALS

We are so excited to be back IN PERSON for the St. Louis Walk to Defeat ALS this Saturday (June 25, 2022) in Forest Park. It has been three long years since we have been able to gather together as a community for the St. Louis Walk, and the chance to see so many old and new friends in one place has us all counting down the hours.

Among the most important parts of a Walk to Defeat ALS day is the memorial banner, which lists the names of each person our Chapter served who we have lost to ALS, and anyone who is being walked in memory of. For the last two years when we couldn’t gather in person, we created a virtual memorial banner and posted it to our Walk to Defeat ALS Facebook page. Even though we will be back in Forest Park this year, we’ve updated the virtual banner to create a lasting memorial to those we have lost to ALS that the ALS Association St. Louis Regional Chapter served during their fight. We wanted to share it with you here as well.

It Takes All of Us—ALS Awareness Month

You’d be forgiven by most if you admitted you can’t keep up. There are awareness months, weeks or days for so many things. It’s not that it is a bad thing, it’s just that it is it so much. And yet here we are again, reminding you that May is ALS Awareness Month. Why?

And honestly, if you are a regular visitor here, you don’t really need reminding. As a part of the ALS community you are well aware of the challenges of this horrible disease. You are aware of the progress in research being made even as we all wish it would move faster. You are aware of the funding ALS advocates have been able to secure even as we all wish it could be more.

Still, ALS is categorized as a rare disease, and for a large portion of the overall population, ALS isn’t something that crosses the mind very often. Sure, they probably know about Lou Gehrig and “Lou Gehrig’s Disease,” and they probably remember the Ice Bucket Challenge and what a wild ride that was. But other than that? Like we said, it’s hard to keep up.

So it as much to remind the world as to remind ourselves that each May we work to shine a light on all people with ALS, and all the people who are working every day to find treatments, and a cure. To remind everyone that of the more than 140 active research projects around the world. To remind everyone that thanks to more than 40,000 ALS advocates, we secured millions in additional federal dollars to support that research, veterans with ALS, and to empower people with ALS to live life to the fullest.

“You name it, I’ve pretty much done it”—Appreciating Volunteer Diana Wunning for Volunteer Appreciation Month

Over her years as a volunteer with the ALS Association St. Louis Regional Chapter, Diana Wunning has seen—and done—just about everything. She’s been volunteering long enough to remember the days when mailings were all done in-house and by hand. She recalls sorting postal tray after postal tray of envelopes by ZIP code. She recalls VERY early mornings at the Walk to Defeat ALS when she’d be out putting up signs to direct people to the right spot. Pretty much anything that needed to done, Diana has done it some point along the way. In fact, she recalls not just volunteering, but managing other volunteers.

“In the years before we had a volunteer coordinator I’d be there very early and help oversee the volunteers and make sure everyone was where they needed to be day of Walk,” she says. “You name it, I’ve pretty much done it.”

“Give You More Energy Back for the Things You Want to Do”—Strategies for Maintaining Mobility Video Series

Over the years we’ve talked a lot about how no two cases of ALS are the same; about how each person with ALS and their caregivers experience ALS in their own way. But we also have learned that the experiences of those who have seen the challenges of ALS can be very helpful to those facing the disease. There are solutions out there to many of the challenges people with ALS face, and as importantly there are many, many people out there who are willing to offer both advice and assistance.

About a year ago, we took a look at a video series that explored the respiratory challenges of ALS. Now in a new video series, the ALS Association takes a look at some strategies for coping with and preparing for changes in mobility.

ALS Advocacy Efforts Roll On

We all know those tasks that are never done. There is always more laundry to do, same with the dishes. And sure, the lawn mowing takes a break for the colder months, but come spring the grass will be growing again. Which is not to say that all tasks that are never done are necessarily unpleasant. Taking the dog for a walk can be enjoyable for both human and canine. Pulling weeds from the garden has a certain Zen attraction for many.

ALS advocates had reason to celebrate in December 2021 with the passage and signing into law of the Accelerating Access to Critical Therapies (ACT) for ALS Act, but there has been no time to wait as 2022 moves along with many policy priorities still on the table. For ALS advocates, there is always more to do.

Winter 2022 ALS Research Round Up

We’ve talked before here about how research is incremental. How one small discovery leads to another discovery, which informs the direction of another study. But while research progress can at times seem slow, that should not be mistaken for a lack of urgency among those doing the research. In fact, the ALS Association has recently made the case to an important arm of the U.S. government that it wants their help in moving ALS research forward even faster.

Thanks for Stopping By—Our 200th Post on ALS Connect

We admit, it snuck up on us. We have been posting here at ALS Connect since 2016, and it didn’t really occur to us to check in on how many posts that was. But as it turns out, this is the 200^th post since we started back then. So it seemed appropriate to take a quick look back before we start into the next 200.

Finding a Way—A Look Back at 2021

In a lot of ways, 2021 has been a roller coaster ride. For many in the ALS community and beyond, the year began on a hopeful note with COVID vaccines becoming more and more available. For a few weeks in early summer, it looked like the pandemic might be behind us. But as summer rolled on and eventually turned to fall the word “variant” entered our vocabulary is a big way, and as we near the end of December we find ourselves back in a world of uncertainty.

Dispatches From a Former Caregiver—Epilogue

Today’s blog post is the last in the 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 has explored the parts of his and Tammy’s story that tended to the, shall we say, more irreverent side of their journey.

We’d like to say a heartfelt thank you to Scott for taking us along for the ride on this journey with him and Tammy. Scott thought it appropriate to give Tammy the last word to end the series, and so now here are a few final words from Scott, and Tammy….

Dispatches From a Former Caregiver—Our Journey Ends

November is National Family Caregivers Month, and today’s blog post is the fourth 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.

Today Scott brings his and Tammy’s story back from Europe to the United States. Back in the U.S. they face challenges with medical devices, accessible seating, and unfamiliar bathroom tile. Lastly, they reach the end of their journey with ALS.