The stress of caregiving and grief led to brain fog I didn’t notice at first

When my late husband, Jeff, was diagnosed with ALS in 2018, I knew it would bring emotional challenges for both of us. I expected — correctly, as it turns out — that we’d feel scared, anxious, and sad. I recognized the immediate and lingering shock it brought in different…

The first patient has been dosed in a Phase 2 clinical study testing RAG-17, a therapy being developed by Ractigen Therapeutics for people with amyotrophic lateral sclerosis (ALS) who carry mutations in the SOD1 gene (SOD1-ALS). The progression into the Phase 2 portion of the trial follows the…

Every step of an ALS journey is difficult, but somehow we’re wired with the ability to forget much of the pain and remember the good. I wrote last week about our current challenge of finding nighttime caregivers. After getting all of the shifts covered, one of our caregivers…

Clene is scheduled to meet with the U.S. Food and Drug Administration (FDA) in the coming months to discuss new data and a potential path toward accelerated approval for CNM-Au8, an oral therapy being developed for amyotrophic lateral sclerosis (ALS). The company plans to argue that the…

I’m always on the lookout for strategies to help my day-to-day life with ALS go more smoothly. Recently, I found a surprising spark of inspiration in a junk drawer in the kitchen. It wasn’t something hiding inside the drawer that helped; instead, it was my frustrating encounter with the…

The first participants have been dosed in an early Phase 1 clinical study that’s testing NRG5051, a first-in-class treatment candidate for amyotrophic lateral sclerosis (ALS) and Parkinson’s disease, in healthy volunteers. Developed by NRG Therapeutics, the experimental therapy is designed to restore the health of mitochondria, known…

Note: This story has been updated Jan. 16, 2026, to correct that once the therapy is delivered, the gene, not the viral vector, remains inside the cell. The U.S. Food and Drug Administration (FDA) has granted fast-track designation to VectorY Therapeutics’ lead investigational therapy, VTx-002, to treat amyotrophic…

The ALS Association is urging members of Congress to take action to address issues with instability in leadership at the National Institutes of Health (NIH). At issue is the Trump administration’s decision not to renew the contract of Walter J. Koroshetz, MD, the director of the National Institute of…

Ed and his wife Karen were shocked to hear his ALS diagnosis, but with the help of the VA and others in their community, they discovered they were far from alone. This content is sponsored by Tanabe Pharma America, Inc. (TPA) and is intended for US audiences only. Any other…

Aperture Therapeutics said it is advancing its RNA-targeting therapy APRTX-003 as a potential treatment for amyotrophic lateral sclerosis (ALS). The therapy, currently in preclinical development, is designed to reduce the production of matrix metalloproteinase-9 (MMP-9) by targeting its template RNA molecule. When overactive, this enzyme may lead to…