I was struck by the wording in an advertisement in Quest magazine, a publication of the Muscular Dystrophy Association, that invited people “coping with amyotrophic lateral sclerosis (ALS)” to participate in an observational study. I think of “coping” as not only dealing with something difficult, but doing so…
It feels like a win when we can figure out how to include my husband, Todd, in game nights. He is paralyzed because of amyotrophic lateral sclerosis (ALS), so any game that requires writing or moving is a challenge. That would include most games, but we can make some…
“How am I supposed to drive when I can’t see anything?” my nearly 16-year-old daughter asked. Sara and I were logging night-driving hours, which are required before she can take the second segment of driver’s education in January. She already has 12 hours behind the wheel, mostly during the day,…
Before his recent death, motor neuron disease (MND) patient Anthony Walsh had the opportunity to try a prototype Toyota Human Support Robot (HSR), providing a glimpse into the kind of technology that could be used to help people with amyotrophic lateral sclerosis and other MNDs with everyday tasks. Walsh, who was…
“You hold the key to love and fear All in your trembling hand Just one key unlocks them both It’s there at your command Come on people now Smile on your brother Everybody get together…
BioArctic AB announced that it is advancing work into selective antibodies against TAR DNA-binding protein 43 (TDP-43) that when misfolded can form the toxic clumps, or aggregates, believed to be involved in the development of amyotrophic lateral sclerosis (ALS) and other neurodegenerative disorders. One potential therapy approach is called…
The HEALEY ALS platform trial, the first study to test several therapy candidates for amyotrophic lateral sclerosis (ALS) simultaneously, has completed enrollment for at least two of its first three regimens. These include Clene Nanomedicine’s CNM-Au8 (NCT04414345) and Biohaven Pharmaceuticals’ verdiperstat (NCT04436510). The recruitment status…
When I learned I had amyotrophic lateral sclerosis (ALS), my whole world changed. My husband’s world changed, too, as he suddenly found himself in the role of being my caregiver. For some ALS patients and caregivers, the new responsibilities that follow a diagnosis begin almost immediately. Ours followed a slower…
Numotion has partnered with Team Gleason — the nonprofit started by former pro football player Steve Gleason after his 2011 amyotrophic lateral sclerosis (ALS) diagnosis — to improve access to advanced equipment and technology for ALS patients and their families. The partners also will focus on developing mobility and…
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…
