ALS News Today

ALS News Today is a daily online news platform dedicated to keeping ALS patients and their caregivers informed about the newest scientific research and advancements related to the disease. Despite ongoing research and development efforts in ALS treatment, health media often overlooks this important information. To address this gap, ALS News Today employs a skilled team of researchers and journalists who gather the latest news on ALS and present it in an accessible way for patients.

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Seeing the rhythm of my life as I navigate ALS

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.
Finding humor lifts our spirits in life with ALS

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.
Groups ask lawmakers to preserve National ALS Registry funding

1 week ago | alsnewstoday.com | Margarida Maia

ALS groups are asking lawmakers to preserve federal funding for the National ALS Registry and National ALS Biorepository, the first and only comprehensive nationwide resource to collect and analyze data for better understanding amyotrophic lateral sclerosis (ALS). “A recently leaked draft memo from the U.S. Department of Health and Human Services (HHS) proposes to eliminate federal funding for the Registry and Biorepository,” the ALS Association wrote in a blog post.
Where's the real change since the ice bucket challenge for ALS?

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.
Wings Over Wall Street marks 25 years of ALS fundraising on June 25

2 weeks ago | alsnewstoday.com | Lindsey Shapiro

The Muscular Dystrophy Association (MDA) will celebrate the 25th anniversary on June 25 of its Wings Over Wall Street Gala, an annual fundraiser to support research for amyotrophic lateral sclerosis (ALS). The event will take place at the Edison Ballroom in New York City, starting at 6 p.m. ET, and includes a cocktail reception, dinner, and an awards program to recognize leaders in ALS research and advocacy.
Researchers discover cell pathway that prevents TDP-43 aggregation...

2 weeks ago | alsnewstoday.com | Steve Bryson

Researchers have discovered a pathway in cells that prevents the formation of TDP-43 protein clumps, which contribute to nerve cell damage in nearly all people with amyotrophic lateral sclerosis (ALS). The findings may aid ALS therapies that can activate the pathway and potentially limit TDP-43 clumping and prevent nerve cell death.
Living with ALS changed my priorities in life, permanently

3 weeks ago | alsnewstoday.com | Juliet Taylor

Sometime in my mid-40s, I wrote a list of goals I wanted to achieve before turning 50. I no longer have the list, but I remember a few things on it: Learn a second language. Complete one half-marathon each year. And my then-favorite, visit 50 countries by the time I turned 50. At the time, those goals seemed attainable and were aligned with the kind of person I wanted to be — healthy, curious, and motivated. That was before my late husband, Jeff, was diagnosed with ALS when I was 48 and he was 58.
RNS60 safe, well tolerated in EAP for advanced ALS

3 weeks ago | alsnewstoday.com | Margarida Maia

RNS60 was well tolerated when inhaled twice daily at home as part of an expanded access program (EAP), and it could be a safe option for people with advanced amyotrophic lateral sclerosis (ALS), a study suggested. “This EAP supports the safety and tolerability of RNS60,” researchers wrote in “An Expanded Access Protocol of RNS60 in Amyotrophic Lateral Sclerosis,” which was published as a short report in Muscle & Nerve.
How I use a shoehorn to help me live well with ALS

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.
SOD1-ALS disease progression may slow with RAG-17: Final trial data

1 month ago | alsnewstoday.com | Steve Bryson |Patricia Inacio |Esteban Cerezo |Lindsey Shapiro

An experimental candidate by Ractigen Therapeutics to treat amyotrophic lateral sclerosis (ALS) linked to mutations in the SOD1 gene has shown promising signs of slowed functional decline and stable or improved breathing in ALS patients of a small early trial. The therapy, RAG-17, also significantly reduced blood levels of neurofilament light chain (NfL), a biomarker of nerve damage, and demonstrated target engagement, as indicated by a drop in SOD1 protein levels.