Barriers need to be overcome in order to facilitate community engagement programs for people with motor neurone disease (MND), a group of diseases that includes amyotrophic lateral sclerosis (ALS), a new study shows. The study, “Supporting access to activities to enhance well‐being and reduce social…

Nine months after my husband, Todd, was diagnosed with ALS, he entered a social media contest with a $100,000 grand prize to use to fulfill a dream. Contestants with the most votes advanced to the next round. Todd’s dream was to build a handicapped-accessible home near my parents. The home…

Weight loss at the time of diagnosis appears common among people with amyotrophic lateral sclerosis (ALS), regardless of whether they have dysphagia or other bulbar-onset symptoms, a study looking at more than 2,400 patients found. A severe degree of weight loss is associated with a higher risk of death, its…

I found a walking buddy, and he’s teaching me how to live with my husband’s ALS. When my gym closed, I turned to cross-country skiing every day. When the snow melted, I took up Nordic walking around our fields. One day, returning from my walk, I went to check…

Three Canadian provinces — Ontario, New Brunswick, and Alberta — have added Radicava (edaravone), a treatment for with amyotrophic lateral sclerosis (ALS), to their provincial medication plans. These recent but separate actions mean that Mitsubishi Tanabe Pharma’s intravenous infusion therapy is now listed on each province’s individual public…

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…

I thought my husband, Todd, should quit driving long before he was ready to hang up the keys. When ALS had weakened his left arm and right hand, he would get gas from a full-service station. I questioned whether he should be driving when he couldn’t pump gas for himself.

“Without your love, I’d be nowhere at all. I’d be lost if not for you.” The inspiration for that Bob Dylan song is a mystery to the general public. However, the lyrics come close to capturing my indebtedness to…

Denali Therapeutics and Sanofi announced a pause in clinical testing of their small molecule inhibitor DNL747 in favor of work on a possibly more effective compound, DNL788, for neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS), Alzheimer’s, and multiple sclerosis. DNL747 was seen to be safe…

Ten years ago today, my husband, Todd, was diagnosed with ALS. I’m grateful that our kids have had their dad much longer than we thought they would. When Todd was diagnosed, Sara was 4, and Isaac was just 9 months old, so we thought they might not even remember him.