This New Year, Let’s Nurture Our Will to Want to Live

Note: This column includes a mention of suicide. The most powerful force within people is the impulse to stay alive. Our survival instinct is so strong that we’re willing and inexplicably able to perform inhuman feats and take unimaginable risks. According to psychologist Abraham Maslow, survival is the foundation…

I feel compelled to seek out beauty and create a warm home, perhaps partly as an antidote to the difficulties we experience because my husband, Todd, has ALS. In a way, choosing to celebrate feels like a revolt against this devastating disease. A little over a week ago, I…

EpiSwitch, a non-invasive, blood-based test developed by Oxford BioDynamics, successfully stratified patients with amyotrophic lateral sclerosis (ALS) as fast versus slow progressors, according to an interim analysis of the REFINE-ALS study. These findings highlight the potential of the biomarker test to better classify disease progression in ALS patients…

Health Canada has given a green light to QurAlis‘ request to open a Phase 1 clinical trial of QRL-201, its candidate antisense oligonucleotide (ASO) molecule to protect and repair nerve cells, slowing disease progression, in people with amyotrophic lateral sclerosis (ALS). The global trial, called ANQUR (NCT05633459), will…

I’m always surprised how something simple and totally unrelated to ALS can change my perspective about living with the disease. For example, who knew that a bag full of unfinished knitting and crocheting projects could lift me out of a temporary mental funk, return me to feeling positive…

BrainStorm Cell Therapeutics has requested a Type A meeting with the U.S. Food and Drug Administration (FDA) to discuss the agency’s recent refusal to review its application for NurOwn as a treatment for amyotrophic lateral sclerosis (ALS). Type A meetings are scheduled to resolve differences between the…

Health Canada asked more information regarding masitinib as a potential add-on therapy for amyotrophic lateral sclerosis (ALS) before continuing to review a request for its approval. AB Science, masitinib’s developer, now has 90 consecutive days to reply to the notice of deficiency issued by Health Canada, given…

For my late husband, Jeff, and me, the most difficult and saddening aspect of his ALS progression was the loss of his voice. It was heartbreaking for both of us when he lost the ability to speak, also known as dysarthria, early in his condition. Much of Jeff’s…

A low dose of aldesleukin, an immunotherapy approved for certain cancers, slowed disease progression and significantly improved survival in people with amyotrophic lateral sclerosis (ALS), particularly in those with less aggressive disease. These are the most recent results from the MIROCALS Phase 2 trial (NCT03039673), which tested aldesleukin…

Because life with ALS only gets harder as time goes by, prayer has felt increasingly unproductive for me. And after more than a decade of watching my husband, Todd, suffer from the disease, my prayers have been full of dismay. “God, are you there? Don’t you care? Don’t you…