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1 week ago | 
alsnewstoday.com | Dagmar Munn |Kristin Neva
The other day, my husband spotted me putting on my sneakers while using a long shoehorn and asked, “Wouldn’t that be a lot easier if we got you a pair of those new step-in shoes?”I’ll admit that living with ALS has me continually thinking of ways to make my life easier. But it’s also made me super picky about my shoes. So without looking up, I mumbled, “I don’t know, maybe.
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1 week ago | 
alsnewstoday.com | Margarida Maia |Kristin Neva |Katherine Poinsatte
Neurosense Therapeutics’ oral therapy PrimeC significantly reduces blood levels of miRNAs — molecules involved in regulating gene activity — associated with disease progression and survival in people with amyotrophic lateral sclerosis (ALS). That’s according to six-month biomarker data from the Phase 2b PARADIGM clinical trial (NCT05357950), in which 68 adults with ALS were randomly assigned to receive either PrimeC or a placebo for six months, followed by one year on the therapy.
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2 weeks ago | 
alsnewstoday.com | Kristin Neva |Andrea Lobo
We didn’t realize how much my husband Todd’s comfort depended on his custom-fit power wheelchair until he had to go without it. A few weeks ago, Todd, who has ALS, decided to order a new wheelchair after finding out that his 11-year-old Permobil C300 isn’t fully compatible with the latest eye-gaze technology that he’d need to safely drive the chair. The new chair is months from arriving, so in the meantime, we needed to repair his current one.
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3 weeks ago | 
alsnewstoday.com | Kristin Neva |Marisa Wexler
Last week for spring break, I traveled with my son from snowy Michigan to sunny Florida. Siesta Key was just as beautiful as I remembered from 15 years ago when my husband, Todd, and I vacationed there with our two small children, along with Todd’s parents and my brother who was living there. We rented a condo and spent time on the beach with its soft, white, powdery sand, and my brother and I went parasailing.
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3 weeks ago | 
alsnewstoday.com | Juliet Taylor |Kristin Neva |Patricia Inacio
The weeks immediately following my late husband’s ALS diagnosis were the scariest and most unsettling of my life. Even with Jeff’s physical symptoms pointing toward ALS, nothing could’ve prepared us to actually hear those words when they were delivered in a windowless examination room in Baltimore, in November 2018. In many respects, those initial days of shock and despair were more difficult than any that followed.
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4 weeks ago | 
alsnewstoday.com | Kristin Neva |Margarida Maia
It’s hard to live in limbo with the slow but relentless progression of my husband Todd’s ALS. A couple years after Todd was diagnosed, he went on permanent disability from his work. He could still speak and had the time, so he visited my great-uncle nearly every day in a long-term care facility to read to him. Halfway through Herman Melville’s “Moby-Dick,” Uncle Carl passed away. Todd tried to plow through the rest of the whaling chapters but couldn’t finish the book. The middle was too boring.
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4 weeks ago | 
alsnewstoday.com | Dagmar Munn |Margarida Maia |Kristin Neva
If you’ve been keeping up with my recent columns, you’ve likely figured out that even though I have ALS, I maintain a glass-half-full attitude. So, today, I thought you’d enjoy learning how I deal with what has been a constant challenge for me: plastic bottles. The trouble with plastic bottles is that they have lids — all kinds of lids.
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1 month ago | 
alsnewstoday.com | Kristin Neva |Juliet Taylor |Dagmar Munn
After decades of classic cross-country skiing, I realized that the groomed track is too wide for me, and it got me thinking how difficult it is to find single solutions to help everybody with ALS. We had springlike weather this past week in Michigan’s Upper Peninsula, and I got out on Michigan Tech’s ski trails on a 50-degree afternoon. Getting exercise and being in nature help me manage the stress of my husband’s ongoing decline because of ALS.
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1 month ago | 
alsnewstoday.com | Margarida Maia |Kristin Neva |Marisa Wexler |Patricia Inacio
Cognixion is recruiting adults with amyotrophic lateral sclerosis (ALS) for a clinical trial testing ONE Axon-R, a wearable headset that combines augmented reality and brain-computer interface technology with an artificial intelligence (AI) application to facilitate communication. Launched early this year at a single site in the U.S., the clinical trial (NCT06810219) is looking for up to 10 adults with late-stage ALS who need an assistive device to communicate, Cognixion said.
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1 month ago | 
alsnewstoday.com | Margarida Maia |Lindsey Shapiro |Juliet Taylor |Kristin Neva
Using a smartphone app to self-assess ALS Functional Rating Scale-Revised (ALSFRS-R) scores, a standardized measure of amyotrophic lateral sclerosis (ALS) severity, may be as reliable as clinic-based assessments, a study reports. Its findings suggest this app could be a useful digital tool for remote monitoring of ALS, allowing patients to track how fast their disease is progressing at home while awaiting a next clinic visit.
