New ALS gene mutation found in families in Spain: Study

New ALS gene mutation found in families in Spain: Study

A new genetic mutation that may cause amyotrophic lateral sclerosis (ALS) has been discovered in families living in La Rioja, a region in Spain, according to a study. The gene mutation, found in 10 ALS patients from seven different families, affected the ARPP21 gene, which encodes a protein that…

Just why was I saving some of my old clothes?

Imagine you’re all alone, stranded on a remote island and surrounded by miles and miles of uncharted ocean. Here’s my question: How much time would you let pass before giving up hope of ever being rescued? One year? How about five years? Or are you an “I’ll never give up…

Phase 2 trial planned for IRX4204, targeting neuroinflammation

Io Therapeutics is planning to launch a Phase 2 trial into its investigational oral therapy IRX4204 in people with amyotrophic lateral sclerosis (ALS). The decision follows recent tests showing that the candidate treatment dampened neuroinflammation in an animal model of neuronal autoimmunity, or diseases marked by self-directed…

Sleeping with the enemy after an ALS diagnosis

I’ve previously written about sleeping and described how bedtime is one of my most anticipated periods of the day. In this column, I’d like to go a little deeper and get some feedback from other ALS patients. Do you remember the Julia Roberts movie “Sleeping with…

New B-cell therapy eases disease severity, delays onset: Study

Repeat infusions of naive immune B-cells were safe and delayed disease onset, reduced disease severity, and extended survival in animal models of amyotrophic lateral sclerosis (ALS), a study found. The approach was also deemed safe in the treatment’s first in-human case study, in which it eased disease severity and…

A good meal makes living with ALS a little better

“I’ve learned a lot of stuff I wish I’d known 30 years ago,” my husband, Todd, said after eating a meal of baked fish that I’d first brined, per his suggestion. Todd is paralyzed because of ALS, and he uses a noninvasive ventilator. His neck is too weak…