It’s always gratifying to know what I write is helpful to others living with ALS. Recently, I wrote about how I periodically take the time to review my daily habits and set new goals for the month. While readers left many comments thanking me, others asked if I had…
How to Find Balance in an Unbalanced Life
Head trauma, electrical burns, and hobbies involving the toxic metal lead appear to be risk factors for developing amyotrophic lateral sclerosis (ALS), a U.S.-based study found. Holding a job in mechanics, painting, or construction also significantly increase the chances of developing the disease, researchers noted. The study, “…
A metabolite of testosterone, dihydrotestosterone (DHT), is found at significantly lower levels in the cerebrospinal fluid of people with amyotrophic lateral sclerosis (ALS), a small study found. This metabolite, or hormone, is likely critical for the survival of motor neurons, and its lack in the central…
Treatment with AMX0035, Amylyx’s experimental oral therapy, significantly extends the lives of amyotrophic lateral sclerosis (ALS) patients with rapidly progressing disease, according to a long-term survival analysis of the CENTAUR Phase 2/3 trial. The new data were reported in a study titled “Long‐Term…
October is International Augmentative and Alternative Communication (AAC) Awareness Month, set aside annually to inform the public about how amyotrophic lateral sclerosis (ALS) patients and others use these devices to communicate. From educational presentations to personal videos, supporters globally are marking the event organized by the International…
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Our Bittersweet Family Life
We had an unseasonably warm fall day while Todd’s sister was visiting from out of state last week. I asked Todd if he’d want to head down to McLain State Park just 15 minutes from our home. “I suppose,” he said somewhat reluctantly. He wanted to be social even…
With a €1 million (about $1.1 million) prize being offered, researchers are invited to join a challenge that seeks to give people with motor neuron diseases (MND) – including those with amyotrophic lateral sclerosis (ALS) – improved independence and a more normal lifestyle. The Cullen Education and…
“What do we do now?” That line from the 1972 movie “The Candidate” came to mind recently. The movie stars Robert Redford as a political neophyte. Redford’s character, Bill McKay, is offered as a sacrificial lamb…
Most people with bulbar onset amyotrophic lateral sclerosis (ALS) showed distinct signs of motor neuron injury starting in the bulbar region of the brain that controls swallowing and speaking, before symptoms descended to regions that control the upper limbs and then the lower…
A Phase 2 and potentially pivotal study investigating pegcetacoplan (APL-2) as a potential treatment for amyotrophic lateral sclerosis (ALS) is now enrolling patients, Apellis Pharmaceuticals, the therapy’s developer, announced in a press release. The MERIDIAN trial (NCT04579666) is enrolling up to 228 adults with sporadic ALS and…
Recent Posts
- US lawmakers reintroduce bill to improve access to treatment for ALS
- An emotional dance performance mirrored my life with ALS
- Expanded access program for ALS drug MN-166 at 50% enrollment
- US clinical trials lack diverse representation of ALS patients
- Scientists grow specialized motor neurons to aid in ALS research