The U.S. Food and Drug Administration (FDA) has lifted a partial clinical hold that limited the use of certain dose levels of prosetin being tested in ProJenX’s Phase 1 trial. The PRO-101 trial (NCT05279755) is a three-part study designed to test the oral medication in healthy volunteers and…

Spanish pharmaceutical company Ferrer will co-develop and market Verge Genomics’ investigational PIKfyve inhibitor VRG50635 for the treatment of amyotrophic lateral sclerosis (ALS) in Europe, Central and South America, Southeast Asia, and Japan, under a collaboration agreement announced by the two companies. Ferrer will have exclusive co-development and commercialization…

Brain Trust Bio (BTB) has been cleared to launch Phase 1 clinical trials in Australia to test the efficacy of its patented method for delivering therapeutics directly into the spinal canal, with a focus on the amyotrophic lateral sclerosis (ALS) therapy riluzole. The approach is intended to further…

I recently came across a CNN opinion piece by writer s.e. smith titled “Jokes about disability aren’t taboo. But here’s who shouldn’t be telling them.” I read on, because my husband and I often use humor to deal with the difficulty of life with ALS, as Todd…

Even before my late husband, Jeff, was diagnosed with ALS in 2018, we approached his unusual and alarming symptoms as a team. He’d shared with me from the beginning his painless but mysterious foot drop, and together our concerns grew when he began to slur his speech. From…

When investigational amyotrophic lateral sclerosis (ALS) therapy CNM-Au8 reaches the bloodstream, it attracts a layer of proteins called a corona to its surface that help it more easily reach the brain and last longer in circulation, according to recent research. Developer Clene Nanomedicine says the findings are consistent…

Researchers at Mass General Brigham have started an effort to develop brain-computer interfaces (BCI) for people with neurological diseases or brain injuries, including amyotrophic lateral sclerosis (ALS). BCI technologies rely on a person’s unique brain signaling patterns to interpret their intentions, then use that information to control a device…

Our family had another close call recently that caused us to our reexamine our methods of emergency communication. Due to ALS, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is dependent on noninvasive ventilation to breathe and to talk. Without…

I have an imaginary toolkit filled with a variety of stress-reduction strategies to help me when life’s speed bumps appear. Living with ALS is stressful enough, but add in TV news, social media, and other minor dramas and I can quickly feel overwhelmed. In addition, I was bored…

A couple of weeks ago, I lined up a daytime caregiver for my husband, Todd, so I could take a day trip with our 14-year-old son to ski and snowboard. During the two-hour car ride, he introduced me to the “Bellied Up” podcast, a call-in advice show with comedians…