For many of those touched by ALS, the impact is a lasting one. Many who have known someone who has passed away from ALS look to find a way to give back to the fight to end ALS, be it through volunteering, spreading awareness, or donations. The timing of when they come to the cause is as individual as their stories; some are ready soon after losing someone, others find that time brings them back. Each find their own way, in their own time.
For Byron von Rosenberg, the journey with ALS began 20 years ago, when his father was diagnosed with the disease. He passed away in July 2002. Byron’s very first poem, “Look at My Hands,” was written about his father’s struggle with ALS. The poem is a sort of conversation between God, a father, and son, and remains a guide to Bryon to this day.
From that poem and a lifelong love of words, other poems and stories came, including his most well-known poem “I Don’t Want to Kiss a Llama!” Since then, Bryon has made this love of words into a 2nd career of sorts as a poet, author and storyteller.
But having been touched by ALS, Bryon wanted to find a way to give back through his work. Through the end of October, he is donating $1 from every book sold to the ALS Association St. Louis Regional Chapter, and is planning more opportunities to support the work of the ALS Association in the upcoming months.
Continue reading On Llamas, ALS, and Love—Author Finds His Own Way to Give Back
It has been a busy few months for Joaquin Buckley, who Saturday night was a winner in his latest UFC fight to push his record to 13-4. But as he recently shared with us in the latest edition of The Update newsletter, his most important role is that of caregiver to his grandmother Peggy Brooks, who was diagnosed with ALS in 2017. Here is their story:
You wouldn’t know just by looking at 27-year old UFC Knockout of the Year Winner Joaquin Buckley that he’s facing challenges brought on by a neurodegenerative disease. Though he’s not the one experiencing symptoms, his life was forever altered when his grandmother was diagnosed with ALS in 2017.
Continue reading From The Update: An Unexpected Fight—Local UFC Star & His Grandmother Battle ALS Together
The results of the ALS Focus Caregiver Survey were published recently, and they tell a story that is familiar to many: time is a finite resource, and how we choose to spend our time says a lot about what we think is important.
This survey included responses from over 600 current and past caregivers about their needs and wellbeing. They were asked about topics including the amount of time they dedicated to caregiving, the programs and tools they used as caregivers, how prepared they felt they were for changes in caregiving responsibilities, their concerns about caregiving, and how they assessed their quality of life.
Continue reading Time is a Precious Commodity—ALS Focus Caregiver Survey Results
It’s easy to imagine research into any topic, and especially into ALS, as it might appear in a movie or TV show. Someone somewhere in a lab peering into a microscope or a test tube suddenly jumps up and exclaims “I’ve found it!”, followed by a montage of headlines announcing the breakthrough.
The truth, of course, is the real research is incremental, with findings reviewed and tested, then reviewed and tested again, and then reviewed and tested some more. Today’s promising result sometimes doesn’t stand up to more detailed scrutiny, and yesterday’s set back may end up bearing fruit with some tweaks or by helping inform a new approach.
With that in mind, we wanted to give you a look at some recent developments that will hopefully continue the trend of promising discoveries from that last few years:
Continue reading Summer 2021 ALS Research Round Up
Today’s blog post is by our intern Bradie Schoemehl, who explains what palliative care is and why it can be beneficial for people with ALS.
By Bradie Schoemehl,
Anyone affected by ALS knows that the loss of the everyday things in life is one of the hardest obstacles to face when battling this disease. The walks around your favorite park are no longer possible; losing the ability to have weekly anticipated outings with family and friends; no longer being able to reach out and grab the hand of a loved one. A person with ALS and their family do not need to face these challenges alone, which is why a palliative care team is so important. Facing this disease head-on is made easier when patients are not only surrounded and supported by loved ones, but also by a dedicated team of professionals. It is the goal of palliative care that patients’ wants and wishes are respected, quality of life is a top priority, and what can be controlled will be controlled.
Continue reading Benefits of Palliative Care for People with ALS
Today’s blog post is the third 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 picks up the story shortly after his last Dispatch as their journey gets smoother in some ways, but bumpier in others…
Continue reading Dispatches From a Former Caregiver—The Cobblestones Aren’t the Only Bumps You Have to Look Out For
Those who have experienced a Walk to Defeat ALS can attest to the sense of community everyone involved feels. The feeling is different for each person, and perhaps different when we gather in-person or when we Walk Your Way as we are again this year, but the act of walking in support of the cause always seems to resonate and remind us all that we are not alone on this journey.
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. Last year when we couldn’t gather in person, we decided to create a virtual memorial banner and posted it to our Walk to Defeat ALS Facebook page. As we are once again walking in the way that makes the most sense for you this year, we’ve created another virtual banner for 2021, and wanted to share it with you here as well.
Continue reading In Memoriam: Remembering Those We’ve Lost to ALS
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.
Continue reading Lou Gehrig Day Shines a Light on ALS Across Major League Baseball
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.
Continue reading Surrounded by Love—A Former Volunteer Shares Her Family’s Journey with ALS
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…
Continue reading Dispatches From a Former Caregiver—Trying to Get on the Right Track, and the Right Train