Having all the facts helps me live with ALS

Those crazy, runaway thoughts. When I was young, I used to have them all the time. That’s because I didn’t know the whole story about certain things, so my mind would invent the answers. While growing up, I learned the value of having all the facts, and my crazy…

Estimates from the World Health Organization suggest 1 in 4 people are likely to be diagnosed with a neurodegenerative condition. By 2040, these diseases may become the second leading cause of death in developed countries. The nonprofit group I AM ALS has launched the Cures…

One year of treatment with the experimental oral therapy PrimeC led to improved iron accumulation in people with amyotrophic lateral sclerosis (ALS), according to new clinical trial data announced by PrimeC’s developer, Neurosense Therapeutics. Previous results showed that people who received PrimeC for one year experienced significantly slower…

Clene will soon meet with the U.S. Food and Drug Administration (FDA) to discuss the potential pathway to accelerated approval for CNM-Au8, the company’s experimental therapy for amyotrophic lateral sclerosis (ALS). Ahead of the meeting, the company has submitted new data to the agency, including the…

“I really want to go to your performance,” my husband, Todd, told our daughter, Sara, who was starting a weeklong intensive with Eisenhower Dance Detroit that will culminate in a performance Saturday. “It’s just too hard to get out, and I don’t want to sit in the theater with…

Diamir Biosciences has received a patent in the European Union that covers the use of microRNAs (miRNAs), that is, small noncoding RNA molecules that modulate gene activity, as biomarkers for diagnosing amyotrophic lateral sclerosis (ALS). The patent, “Methods of using miRNAs from bodily fluids for detection and…

Black people with amyotrophic lateral sclerosis (ALS) tend to have a different disease course than white patients; they are diagnosed at a younger age, more commonly have muscle weakness that starts in the hands, and have pneumonia more frequently, a study from the Centers for Disease Control and Prevention…

A mutation in the IGFBP7 gene is associated with a very rare phenomenon in which people with amyotrophic lateral sclerosis (ALS) have a reversal in disease progression and experience partial or full recovery, a new study reports. Because the mutation results in less production of the resulting protein IGFBP7,…

A man with amyotrophic lateral sclerosis (ALS) implanted with Synchron‘s brain-computer interface was the first person in the world to use his thoughts to control an Apple Vision Pro. Using the investigational brain-computer interface, or BCI, the 64-year-old man, who’d lost function in his upper limbs due to ALS,…

A decade later, the family of Pete Frates, the amyotrophic lateral sclerosis (ALS) patient who helped start the Ice Bucket Challenge, is relaunching the campaign that went viral on social media, raising awareness and money to support ALS research. In an event organized by the Peter Frates…