The Challenge of Finding Fun Family Activities as ALS Progresses

Family fun has gotten harder to come by since my husband, Todd, was diagnosed with ALS and the disease has progressed. Initially, Todd could still walk, but his legs tired easily, so we needed to pace ourselves. It got increasingly difficult to go out as his muscles weakened, but…

A soft robotic implantable device that can exert mechanical force on muscles was shown to reduce muscle atrophy in a mouse model in a recent study. Based on the findings, researchers believe the device may be able to be applied in diseases such as amyotrophic lateral sclerosis (ALS) that…

Veterans with amyotrophic lateral sclerosis (ALS) are calling for the U.S. Food and Drug Administration (FDA) to hold a public advisory committee meeting to discuss the benefits of NurOwn — an investigational cell-based therapy that military service members say has slowed their disease. The request follows the regulatory…

I’m excited to share good news about the growing access by ALS patients to the benefits of mindfulness and meditation. As readers of this column likely know, I’ve been on a quest to increase awareness in the ALS community about these wonderful mind-body practices. Being mindful…

Note: This story was updated Nov. 30, 2022, to indicate six patients in the Phase 2a part of FOCUS-C9 will receive a monthly 10 mg dose of WVE-004 over four months. An ongoing clinical trial of Wave Life Sciences’ WVE-004 in people with amyotrophic lateral sclerosis (ALS) and…

The ALS Society of Canada and Brain Canada are supporting four early-career scientists who are working to advance an understanding of amyotrophic lateral sclerosis (ALS) and treatments for people with the disease. Grants totaling CA$390,000 (about $290,000) will fund projects by three doctoral students and one postdoctoral…

I remember the times before ALS, when after a day away from the house at work or running errands, I’d drive home in anticipation of seeing my late husband Jeff’s blue pickup truck in the driveway. Jeff and I would often arrive home at about the same time each…

An ongoing Phase 3 clinical trial in Europe is testing whether tauroursodeoxycholic acid, added to standard therapy, can slow disease progression and extend survival among people with amyotrophic lateral sclerosis (ALS). The oral compound, also known as TUDCA, is one of the two ingredients in Relyvrio (sodium phenylbutyrate…

My husband, Todd, and I had a stressful night last week. While his nighttime caregiver was getting him ready for bed, Todd felt a rattle in his chest. He hoped that it would settle down once he was in bed. He’s often able to clear his lungs himself…

People who took part in clinical testing of NurOwn, a cell therapy for amyotrophic lateral sclerosis (ALS), and family members have sent a letter in support of Brainstorm Cell Therapeutics and its investigational therapy to the U.S. Food and Drug Administration (FDA). They are also asking for an…