China’s National Medical Products Administration has granted Sineugene Therapeutics permission to begin clinical trials of its gene therapy SNUG01 in people with amyotrophic lateral sclerosis (ALS), clearing the way for clinical trials. The announcement follows a similar decision by the U.S. Food and Drug Administration (FDA). It sets…
The second edition of ALS Nexus — a conference hosted earlier this month in Dallas by the ALS Association — brought together people from across the amyotrophic lateral sclerosis (ALS) community to connect with each other, celebrate recent advances, and share hope for the future. “What really…
Due to a lack of resources and personnel, the U.S. Food and Drug Administration (FDA) has delayed its decision on whether or not to lift the clinical hold on NUZ-001, Neurizon Therapeutics’ investigational therapy for amyotrophic lateral sclerosis (ALS), the developer announced. A decision from the regulatory agency…
I was on schedule Monday morning to get out the door by 11:45 until I had an unwelcome visitor. I had a noon appointment for something that would be difficult to reschedule, so I got my husband, Todd, out of bed early. I parked his power wheelchair at his counter-height…
This summer, I’ve been superfocused on a special fix-up project — namely, my posture. Why? Because earlier this year, whether I was sitting, standing, or walking, I noticed a slow slump forward of my upper body. Oh, I’d always begin sitting tall, but somehow, I’d morph into a shorter me.
An experimental oral therapy for amyotrophic lateral sclerosis (ALS) that’s being developed by Athira Pharma was shown to be safe and well tolerated in healthy volunteers who took part in a Phase 1 clinical trial, and the treatment entered the participants’ brain and spinal cords at dose-proportional levels.
Genetically reprogramming nerve cells to reverse aging may be a viable strategy for treating amyotrophic lateral sclerosis (ALS), a mouse study showed. Researchers found that a gene therapy made the mice’s nerve cells younger and more resilient, which delayed the onset of ALS symptoms. “Our hope is that this…
I remember the first caregiving task that I completed for my late husband, Jeff, after he was diagnosed with ALS in the fall of 2018. His symptoms had started with a foot drop, and by the time of his diagnosis, his right foot had become paralyzed. It became my…
Having ALS is certainly no laughing matter. But I’ve found over the years that it can give rise to many humorous moments. On some days, in fact, finding the funny while in a frustrating situation has been one of my best coping strategies. That’s why I was taken aback to…
I was recently asked, “What can I do to support someone diagnosed with ALS?” I thought back to the days after my husband, Todd, was diagnosed with the disease. We knew little about it, except that it resulted in paralysis and usually death within two to five years.
