“Hurry! I’m having a pee-flex,” my husband said as I put on disposable gloves. I grabbed the urinal and held it for him. Todd invented the word pee-flex to describe the sudden urge to go once he drives his wheelchair into the bathroom. He is paralyzed from ALS, so…

“As I was walking down the street one dark and dreary day, I came upon a billboard, much to my dismay. The billboard was all tattered from the storm the night before. The wind and rain had done their work, and this is what it bore: ‘Drink Coca-Cola cigarettes, smoke…

Total job- and leisure-related physical activity over a lifetime is not a risk factor for amyotrophic lateral sclerosis (ALS), but heavy physical activity on the job is associated with a nearly two-times greater risk of ALS, a study in Germany shows. Also, ALS patients reporting pre-diagnosis and current moderate…

A Phase 2 study of the investigational antibody AT-1501 in treating amyotrophic lateral sclerosis (ALS) has completed patient enrollment in three of its four dosing groups, and is likely to be fully enrolled by year’s end, its developer, Eledon Pharmaceuticals, announced. A total of 54 ALS patients diagnosed in the…

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

Eighteen years ago, Todd and I joined our lives in marriage, vowing for better or worse, in sickness and in health, and we went forward together as friends and allies. Jesus taught that joining in marriage is “two becoming one flesh.” Indeed, I felt oneness with Todd. We liked…

A detailed atlas of the various types of cells that populate the motor cortex, the brain region that controls voluntary movement and is damaged in people with amyotrophic lateral sclerosis (ALS), was created by a worldwide consortium of researchers. The long-term goal of the group, which involves hundreds of…

“You say you got a real solution, Well, you know, We’d all love to see the plan. You ask me for a contribution, Well, you know, We’re all doing what we can.” John Lennon’s lyrics from the song “Revolution” by the Beatles capture some of my concerns regarding the…

The ALS Association is reminding amyotrophic lateral sclerosis (ALS) patients and caregivers that the open enrollment period for Medicare recipients to make changes to their existing coverage runs through Dec. 7. The open enrollment period for altering coverage opened Friday. After Dec. 7. changes will be allowed only after…

Note: This story was updated Oct. 19, 2021, to note that the trial is taking place at 90 clinical sites and to update the contact information, based on additional information from the company. A Phase 3b clinical trial is recruiting adults with amyotrophic lateral sclerosis (ALS) to assess the…