I’ve read dozens, if not more, of the kind of column I’m about to write: first-person narratives that offer advice to one’s younger self, full of lessons learned from difficult life experiences. Before my late husband, Jeff, was diagnosed with ALS, I devoured these columns, always looking for some…

Elevated levels of high-density lipoprotein (HDL) — commonly called the “good” cholesterol — are significantly associated with a poorer survival rate among people with amyotrophic lateral sclerosis (ALS), according to a population-based study in the Netherlands. In contrast, levels of total cholesterol and low-density lipoprotein…

Now that my husband, Todd, is paralyzed and uses a noninvasive ventilator, leaving the house is too hard on him. So when we have a date night, we watch a movie at home. Last weekend, we watched “Good Night Oppy,” a documentary about twin rovers that NASA…

The U.S. Food and Drug Administration (FDA) has announced an advisory committee meeting seeking advice on whether to approve Biogen‘s investigational therapy tofersen for the treatment of amyotrophic lateral sclerosis (ALS) caused by SOD1 gene mutations. The public meeting, to be held online March 22, by…

Neopharm has acquired exclusive rights to commercialize AMX0035 (sodium phenylbutyrate and taurursodiol) in Israel, Gaza, the West Bank, and to the Palestinian Authority as a treatment of amyotrophic lateral sclerosis (ALS). The company’s agreement with Amylyx Pharmaceuticals makes it responsible for the distribution and marketing of AMX0035…

I always love having a good “aha!” moment, especially when it helps improve how I manage my ALS symptoms. Better yet is when I learn that what I thought was a symptom of ALS was actually an impostor, the result of something called “learned nonuse.” Here’s what happened.

The Muscular Dystrophy Association (MDA) has invested $600,000 in PathMaker Neurosystems to help bring a potential noninvasive neuromodulator for amyotrophic lateral sclerosis (ALS) into an initial clinical trial. Funding through the MDA Venture Philanthropy (MVP) program will support an early feasibility study in a small…

My husband, Todd, is increasingly dependent on a noninvasive ventilator as ALS continues to weaken his lungs. Over the past decade as the disease progressed, I’ve had periods of high stress before we adapted to a new normal, such as when Todd continued to drive even though he…

Synchron‘s Stentrode, an implantable brain-computer interface designed to allow people with amyotrophic lateral sclerosis (ALS) and other paralyzing conditions to control a computer using their thoughts, showed a positive safety profile in a small clinical trial. The four people in the Australian study had ALS and severe…

During the years I taught yoga, I always enjoyed explaining the concept of effort and ease. It’s the feeling of holding a yoga pose with the right amount of force. Not too much, not too little — just right. Little did I know how, years later, an expanded version of…