Nine out of 10 people with amyotrophic lateral sclerosis (ALS) who received the experimental cell therapy NurOwn (debamestrocel) in an expanded access program (EAP) following a placebo-controlled Phase 3 trial survived for at least five years after the onset of their symptoms. That’s according to data announced by…
9 of 10 NurOwn-treated ALS patients surpass five-year survival
A week ago Wednesday, on the 15th anniversary of his ALS diagnosis, my husband, Todd, had a dentist appointment. He dreaded the outing because he’s paralyzed below the neck, uses a power wheelchair, and needs breathing support. He hadn’t rolled outside of the house, not even to…
Living with ALS presents many challenges. For me, navigating life with a rollator, thickened beverages, and daily medication often feels like an uphill battle. There are days I wish I could go back to a simpler time, before ALS moved into my life. But since turning back the clock…
People prescribed common psychiatric medications had a higher risk of developing amyotrophic lateral sclerosis (ALS) and saw worse outcomes after a diagnosis, with shorter survival and faster functional decline, a study in Sweden finds. Taking anxiolytics for anxiety, hypnotics or sedatives to help sleep or induce calm, or antidepressants…
Dazucorilant, an oral cortisol modulator being developed by Corcept Therapeutics, significantly improved survival among people with amyotrophic lateral sclerosis (ALS) in a Phase 2 clinical trial. Despite it failing to slow disease progression, the trial’s main goal, Corcept is now seeking guidance from U.S. and European regulators to determine…
An investigational brain-computer interface has allowed a man diagnosed with amyotrophic lateral sclerosis (ALS) to speak in real time, and sing simple melodies, a new study reports. The system can detect the sounds a person intends to produce instead of their intended words, and this allowed the man…
It was seven years ago this summer that I unwittingly and unwillingly became a part of the ALS community when my late husband, Jeff, began exhibiting foot drop and slurred speech, symptoms that were worrisome enough for us to seek medical answers. His relatively quick diagnosis of ALS that…
A bipartisan team of U.S. congressional legislators is calling for increased funding to support research seeking to better understand and develop new treatments for amyotrophic lateral sclerosis (ALS). Congressman Jason Crow, a Democrat representing a district in Colorado, authored a letter to various congressional committees that has been signed…
Someone in an online caregiver support group posted that they were finding value in using ChatGPT as a therapist. Other caregivers chimed in, saying they also turn to the artificial intelligence chatbot for support and find it surprisingly helpful. One person suggested prompting it to “respond like a counselor” or…
Toilets aren’t one of the topics that come up in most conversations, but for those of us living with ALS, it’s fairly common and not at all embarrassing. We’ll often chat about the use, style, and cost of electric bidets, for example. I’ve been using one for several years…
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