Because life with ALS only gets harder as time goes by, prayer has felt increasingly unproductive for me. And after more than a decade of watching my husband, Todd, suffer from the disease, my prayers have been full of dismay. “God, are you there? Don’t you care? Don’t you…

Eikonoklastes Therapeutics and Forge Biologics have announced a new partnership to advance the development of ET-101, an experimental gene therapy for amyotrophic lateral sclerosis (ALS), toward clinical trial testing. Eikonoklastes acquired the rights to ET-101 from the University of California San Diego earlier this year. Under…

Higher levels of inflammatory immune cells called effector T-cells at the time of diagnosis are associated with faster disease progression and worse survival among people with amyotrophic lateral sclerosis (ALS), a new study indicates. In turn, greater numbers of regulatory T-cells, which work to dampen excessive immune responses, were…

I’ll admit that because I live with ALS, some of my past “Human vs. Automation” experiences have been, um, less than perfect. Touchpads that open automated doors don’t always work for me, and voice activation software doesn’t recognize my commands. But now, I have a new sense of…

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…

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…

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…

Have you ever thought about what a single breath means to you? What you can do in one breath? What you can say with one breath? What or whom you can see during one breath? We who suffer from respiratory problems give considerable thought to these questions. On three occasions…

Last weekend, my husband, Todd, and I watched the movie “The Electrical Life of Louis Wain,” about an eccentric artist in Victorian England. Wain’s comical and endearing illustrations of cats changed people’s perceptions of them and led to them being more accepted as household pets. From the description,…