The Muscular Dystrophy Association (MDA) is accepting applications for its Advocacy Collaboration Grant program, which supports projects from organizations working to improve the lives of people with neuromuscular diseases such as amyotrophic lateral sclerosis (ALS).  Applications for this year’s program are open until Oct. 18, and…

The Muscular Dystrophy Association (MDA) and the International Association of Fire Fighters (IAFF) are teaming up once again, launching more than 420 “Fill the Boot” events this year to raise funds for research and care for people with neuromuscular diseases, including amyotrophic lateral sclerosis (ALS). The fundraising initiative will…

Last week on NPR’s “Morning Edition,” correspondent Ashley Westerman talked about Ukrainian women getting manicures. “It’s just part of looking as good as you can. It’s a matter of hygiene for some but mostly a way of feeling normal in wartime.” The piece resonated with me because I’ve…

A gene therapy aimed at stabilizing connections between motor nerve cells and interneurons — a type of cell that regulates motor nerve cell activity — eased motor dysfunction and promoted motor nerve cell survival in a mouse model of amyotrophic lateral sclerosis (ALS), according to a study by European…

A month ago, one of my husband’s nighttime caregivers gave notice that she won’t be able to work beyond the summer, and our search for her replacement began. I asked Todd’s other caregivers to spread the word, I posted on my Facebook page about it, and Todd reached out to…

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…

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,…

The biotechnology company Revir Therapeutics has raised $30 million in funding to advance the development of oral genetic therapies for amyotrophic lateral sclerosis (ALS) and other neurodegenerative disorders. This Series A financing was led by the healthcare-focused venture capital firm Lapam Capital. Revir will use the proceeds to…

Copying someone’s actions can be fun and help us learn new things. But imitation can also be dangerous, especially if you live with a serious condition such as ALS, which I have. I learned a lesson in imitation many years ago, while I was teaching a class in aerobic…