Celebrating My Public and Personal Milestones

In last week’s column, I wrote about a gala banquet that I recently attended. As the event approached, I worried about what I would wear and how others would react to my mobility scooter. But my greatest concern was that I was one of the evening’s honorees. The…

Use of reldesemtiv in a clinical trial in amyotrophic lateral sclerosis (ALS) patients led to a slower decline in muscle control needed for speech relative to placebo, a study reports. The trial used Aural Analytics’ proprietary speech analytics platform technology to evaluate this motor function in a large group of…

Experimental treatment reldesemtiv appears to reduce functional deterioration in patients with fast progressing amyotrophic lateral sclerosis (ALS), a new analysis of the FORTITUDE-ALS trial shows. The additional analyses were presented by the trial’s principal investigator, Jeremy M. Shefner, MD, PhD, a professor at the Barrow Neurological Institute…

The U.S. Department of Defense (DoD) has issued a two-year research grant totaling $758,121 to support a group of scientists from the University of Arizona Health Sciences Center for Innovation in Brain Science (CIBS) working on the development of RASRx1902, a potential treatment for amyotrophic lateral sclerosis…

My heart ached for my kids after my husband, Todd, was diagnosed with amyotrophic lateral sclerosis (ALS). Isaac was 9 months old and Sara was 4. How would ALS affect them? I had no idea how to help them navigate our future. A year after Todd was diagnosed, I…

The Chan Zuckerberg Initiative (CZI) has awarded I AM ALS a $453,000 grant to develop ways to connect amyotrophic lateral sclerosis (ALS) stakeholders and the public in the fight against ALS and other rare disorders. As part of CZI’s wider effort to accelerate investigations into rare diseases,…

Shortly after emerging from the stupor that culminated in my ALS diagnosis, I was consumed with a zeal to learn all that I could about the millstone dangling heavily from my neck. Toward that end, I read everything I could lay my eyes upon, though some material was…

Mutations in the annexin A11 gene (ANXA11), seen in familial amyotrophic lateral sclerosis (ALS) and frontotemporal dementia, disrupt the transport of key RNA molecules inside neurons, recent research shows. The annexin A11 protein is a molecular adaptor required for RNA molecules, essential for neurons’ function, to hitchhike on lysosomes…

Like many who live with ALS symptoms, I rely on a rollator. But when out and about and covering longer distances, I use a mobility scooter. My scooter is perfect, and I feel comfortable and confident going almost anywhere with it. Recently I crossed that almost off the list.

In contrast to what is often assumed, new research suggests that clumps of the protein TDP-43 — a hallmark of amyotrophic lateral sclerosis (ALS) — actually protect nerve cells rather than harm them. If this finding confirmed in future studies, it could hugely impact how ALS and other neurodegenerative diseases…