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Top ALS News Today News

Experimental ALS Drug Shows Unprecedented Recovery in some Patients

Experimental ALS Drug Shows Unprecedented Recovery in some Patients

Coverage: 4 sources

When Columbia neurologist and scientist Neil Shneider speaks to his ALS patients who volunteer for experimental therapies, he's unwaveringly honest.See the Story

My summer as the ALS bag lady taught me how to ask for help

My summer as the ALS bag lady taught me how to ask for help

For the first few years after I was diagnosed with ALS, I followed a daily routine of walking laps in the shallow end of our neighborhood outdoor pool. I soon became friends with a group of women who used the pool at the same time as me. I’ll always remember the summer they taught me a lesson in generosity. However, that lesson came with a caveat: that I always need to be specific when asking someone for their help. Here’s a quick story of how t…Read Article

Treatment with jacifusen shows benefits for some people with FUS-ALS

Maryland · Maryland

Treatment with jacifusen shows benefits for some people with FUS-ALS

Jacifusen was generally well tolerated and reversed disease progression in some people with ALS caused by mutations in the FUS gene.Read Article

Blindspots

New research on ALS opens up for early treatment

Several ALS Patients See Remarkable Response to ASO Treatment

Typically, the goal of ALS treatments is to slow the disease or halt progression. But new data from the antisense oligonucleotide (ASO) jacifusen for FUS-ALS show that two patients went beyond the expected, and showed improvements. “When testing new drugs for ALS, we do not expect to see clinical improvement,” said Neil Shneider, MD, PhD, director of the Eleanor and Lou Gehrig ALS Center and associate professor of motor neuron disorders at Colum…See the Story

What time well spent looks like in life with ALS

One of the interesting mental challenges I continue to experience as I live with ALS is its effect on my perception of time. The predicted prognosis of living only two to five years after symptom onset is a shadow that hangs over every ALS patient. Even though I’ve broken that prediction and am in my 15th year of the disease, I still feel obligated to make every minute count. I often blame my ALS symptoms for standing in the way of me spending m…United States · United States Read Article

Transposon's TPN-101 selected for testing in HEALEY ALS trial

Oral small molecule TPN-101 has been selected for testing in amyotrophic lateral sclerosis (ALS) as part of the HEALEY ALS platform trial. The decision to include TPN-101 in the platform trial (NCT04297683) was based on the treatment’s unique mechanism of action and final data from a Phase 2 clinical trial (NCT04993755) in adults with ALS or frontotemporal dementia (FTD) related to C9orf72 mutations, developer Transposon Therapeutics said. The c…Maryland · Maryland Read Article

Adapting helped us keep the outdoors a part of life with ALS

My late husband, Jeff, and I shared a love of the outdoors, even though our preferred activities were often different. I loved to hike and kayak, while Jeff, who’d been injured when a car hit his bicycle in 2010 and still suffered from orthopedic pain, preferred to relax. Whether at home or traveling, many evenings found him outside with a cigar, a beer, and music playing quietly on a portable speaker. During our relationship, we managed to blen…Annapolis · Annapolis Read Article

Mitochondrial abnormalities seen early in many forms of ALS: Study

A study found that genetic mutations associated with amyotrophic lateral sclerosis (ALS) lead to problems with the function and transport of mitochondria, cellular structures needed for energy production, early in the disease course, before abnormal protein clumps are formed. “We show that the nerve cells, termed motor neurons, that will eventually die in ALS have problems soon after they are formed,” Eva Hedlund, PhD, co-author of the study and…Sweden · Sweden Read Article

FDA Clears Phase 3b Trial of NurOwn for ALS

100% Left coverage: 1 sources

The U.S. Food and Drug Administration (FDA) has cleared a Phase 3b clinical trial to test Brainstorm Cell Therapeutics’ cell-based therapy NurOwn (debamestrocel) in people with amyotrophic lateral sclerosis (ALS). The trial, ENDURANCE (NCT06973629), is expected to open soon at more than a dozen sites across the U.S. It plans to recruit about 200 adults with moderate disease who have been experiencing symptoms of ALS, including muscle weakness, f…United States · United States See the Story

New research on ALS opens up for early treatment

67% Center coverage: 6 sources

Using the gene scissors CRISPR and stem cells, researchers have managed to identify a common denominator for different gene mutations that all cause the neurological disease ALS. The research shows that ALS-linked dysfunction occurs in the energy factories of nerve cells, the mitochondria, before the cells show other signs of disease, which was not previously known.Donald Trump · Austria See the Story

Study Uncovers Common Trigger Across Gene Mutations that Cause ALS

100% Center coverage: 2 sources

Using the gene scissors CRISPR and stem cells, researchers at Stockholm University and the UK Dementia Research Institute (UK DRI) at King's College London have managed to identify a common denominator for different gene mutations that all cause the neurological disease ALS.CRISPR · Mississippi See the Story

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