Connections provide a sense of belonging in life with ALS

Eighteen years ago when expecting my daughter, I decided to become a stay-at-home mom. Mothering a newborn was a joyful season, but it was also exhausting and isolating. Another new mom in my community who’d experienced that same isolation after leaving the workforce started a family club that offered an…

Dimethyl fumarate (DMF) — an oral medication approved for multiple sclerosis — and H-151, an experimental treatment, can suppress inflammatory and abnormal immune pathways thought to be involved in sporadic amyotrophic lateral sclerosis (ALS). These are the findings of a study using immune cells from sporadic ALS patients…

I’ll admit I often worry if I’m being productive with my time and spending it wisely. That’s always been important to me, but it intensified the day I was told I had ALS. That’s when I heard the words “average life expectancy of two to five years” and left…

An ongoing Phase 1 clinical trial of QurAlis’ experimental therapy QRL-201 in people with amyotrophic lateral sclerosis (ALS) is expected to open in the U.K. by the end of the year. The announcement follows the trial’s clearance by the country’s Medicines and Healthcare Products Regulatory Agency. “We look…

With an aim to share expertise and diminish duplicative research and care efforts in amyotrophic lateral sclerosis (ALS), two nonprofits — EverythingALS and CureALS — are combining operations on the EverythingALS platform, with an emphasis on research. The new single nonprofit also will tackle efforts to find…

Spinogenix has launched a clinical trial in Australia to investigate its amyotrophic lateral sclerosis (ALS) treatment candidate SPG302 in patients and healthy volunteers. The first-in-human Phase 1 clinical trial (NCT05882695), which is recruiting up to 112 participants, is being conducted at the Nucleus Network Melbourne, Australia. Its…

Since my husband, Todd, is paralyzed from ALS, he can’t help with household chores and maintenance anymore. That puts much of it on me, but that’s also difficult for him because he loved many of those tasks. He enjoyed his career, which included work in marketing, finance, and manufacturing,…

Amylyx Pharmaceuticals Canada has entered into product listing agreements with Quebec and Ontario to publicly reimburse Albrioza (sodium phenylbutyrate and ursodoxicoltaurine), which was recently approved for amyotrophic lateral sclerosis (ALS). The oral therapy, which is marketed in the U.S. as Relyvrio, has been added to the…

NurOwn, an experimental treatment, significantly lowered neurofilament light chain (NfL) levels in the spinal fluid, a marker of nerve damage, and this seems to predict slower disease progression in amyotrophic lateral sclerosis (ALS) patients. That’s according to a new analysis of Phase 3 clinical trial (NCT03280056) data…

Six years ago, I was a new patient columnist for ALS News Today and wrote a column about how planning ahead helps me dine out with ease. But since that time, my ALS has evolved — and so have my plans. Instead of a rollator, I now…