Shortly after Jeremy Schreiber, then 39, was diagnosed with amyotrophic lateral sclerosis (ALS), he had another life-altering decision to make. “I had a choice — climb into bed and pull the covers over my head or say ‘[expletive] it’ and fight this thing head-on,” Schreiber wrote in an excerpt…
“The secret of life is enjoying the passage of time.” Time fascinates me, now more than ever. In my own way, in the face of ALS, I’ve learned to enjoy its passing. I am writing this seconds after hearing…
Occupational exposure to lead — a heavy metal — prior to disease onset is associated with a more severe disease progression and lower survival among people with amyotrophic lateral sclerosis (ALS), according to a recent study. “In survival analysis of an international cohort [group] of ALS cases, our results…
The Canadian province of British Columbia is giving another CA$2 million (about $1.65 million) to help establish “Project Hope” — what organizers hope will be a world-class amyotrophic lateral sclerosis (ALS) center at the University of British Columbia (UBC). With the new funding, to the ALS Society…
I’m always eager to help others improve their understanding of what it’s like to live with amyotrophic lateral sclerosis (ALS). Likewise, I enjoy learning more about what others in the ALS community think and feel about living with the condition. Recently, I had the opportunity to satisfy both interests and…
The Jane Calmes ALS Scholarship Fund wants to help support students who wish to pursue undergraduate studies, but whose families have been impacted financially by amyotrophic lateral sclerosis (ALS). This is the fourth year The ALS Association, together with Mark Calmes, is offering support to U.S. post-high…
The experimental therapy WVE-004 appears to be engaging its intended target and reducing the amount of toxic proteins in people with amyotrophic lateral sclerosis (ALS) and/or frontotemporal dementia (FTD) caused by mutations in the C9orf72 gene, according to early data from the FOCUS-C9 clinical trial. The trial is currently recruiting adults,…
Blocking channels containing the connexin 43 (Cx43) protein on astrocytes — a type of nerve support cell — slowed disease progression in a mouse model of amyotrophic lateral sclerosis (ALS), a study found. The protein was found to be increased in ALS patient tissues and spinal fluid, and its…
My husband, Todd, gets twice-weekly physical therapy, which significantly improves his quality of life with ALS. Six years ago, Todd was having pain in his shoulders, and his elbows would not fully straighten, making it difficult for him to use his wheelchair. His doctor ordered physical and occupational therapy evaluations…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
