Kristin Neva

1 day ago | alsnewstoday.com | Kristin Neva

I keep playing a new song by Bon Iver. Once my husband, Todd, who has ALS, is set up on his computer after breakfast, I turn my attention to household chores until he needs my help again. My new find, “There’s a Rhythmn” [sic], has a reflective, melancholy feel that resonates with me in this season of my life, so I ask my smart speaker to play it. “Can I feel another way?” Bon Iver croons. “No, not really,” I reply out loud, as I put plates in the dishwasher.

1 week ago | alsnewstoday.com | Kristin Neva

My husband, Todd, and I work New York Times puzzles while we eat breakfast. Because Todd is paralyzed due to ALS, I feed him. We start with the Spelling Bee puzzle, which offers seven letters for you to make words with. There is always at least one word that uses all the letters, called the pangram. We try to find that one first. Todd usually spots it before I do. One morning, I cooked up some leftover steak with onions and fried a couple of eggs. I poured Todd some coffee and put a straw in the cup.

2 weeks ago | alsnewstoday.com | Kristin Neva

Lately I’ve seen people on my social media feed dumping ice water over their heads to promote awareness of mental health, which took me back in time to the ALS ice bucket challenge in 2014. That viral sensation may have been the most effective tool for raising awareness for the rare disease since Lou Gehrig, the New York Yankee, announced his retirement from the game in 1939, following his diagnosis. For decades after, in fact, ALS was commonly known as Lou Gehrig’s disease.

1 month 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.

1 month 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.