Some $2 million in new grants from two U.S. nonprofits are seeking to help scientists globally to find ways to slash the time it takes for an amyotrophic lateral sclerosis (ALS) diagnosis. It’s now estimated to take up to 16 months from symptom onset before most individuals receive a…
People with amyotrophic lateral sclerosis (ALS) who require noninvasive ventilation in later disease stages use significantly higher opioid doses and for more extended periods than do patients who never need mechanical ventilation, according to a new study in Japan. The opioids were started for these individuals mostly to help…
Mutations in the gene NEK1, a major genetic cause of amyotrophic lateral sclerosis (ALS), may work to drive the disease by destabilizing the structure of nerve fibers and disrupting the movement of molecules inside nerve cells, according to a new study. The findings, which show for the first time how…
Like many in the ALS community, I was saddened to learn of the recent death of Bryan Randall, a photographer and the partner of actor Sandra Bullock. I respected that his loved ones honored his request to keep his ALS diagnosis private throughout the course of…
Note: This story was updated Aug. 22, 2023, to correct there are four ALS approved therapies widely available in the U.S. Diarrhea associated with a common amyotrophic lateral sclerosis (ALS) treatment could be a substantial barrier to complying with the medication, according to surveys by Napo Pharmaceuticals. While…
The years since my husband, Todd, was diagnosed with ALS have been hard for both of us, not only physically but also emotionally. I don’t think there’s a way to overcome the grief that accompanies a disease that causes ongoing loss, but we’ve found ways to live with it.
Elevated blood levels of the Cystatin C protein are significantly associated with faster disease progression and shorter survival in people with amyotrophic lateral sclerosis (ALS), according to a study in China. The protein may serve as a biomarker to predict disease outcomes in people with ALS and identify those…
People with amyotrophic lateral sclerosis (ALS) who have a more active innate immune system — the part of the immune system that acts as a first responder to threats — tend to have faster disease progression and poorer survival, a study of large data showed. Findings suggest that measuring…
Last week, I sat in the dentist’s chair filled with gratitude. I know. It’s bonkers. But I couldn’t help myself. I’m grateful knowing that if I have to live with ALS, it’s happening at a time when advances in technology and accommodations help me deal with its many challenges.
Early treatment with Radicava (edaravone), an approved therapy for amyotrophic lateral sclerosis (ALS), significantly reduced the risk of hospitalization, need for ventilatory support, or death compared with delaying treatment for six months. That’s according to analyses of data from Study 19 (NCT01492686), the Phase 3 clinical trial…
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