Until recently, my language skills and speech were best buddies. They were happily and symbiotically entwined, each supporting the other with comfort and ease. Language — the software system — was the one with all the good ideas, reacting to the environment in milliseconds like a gleeful toddler and formulating…
Guest Voice: My ALS speech issues have resulted in unexpected gifts
Coya Therapeutics is preparing to launch a Phase 2 clinical trial in the U.S. to test its COYA 302 as an amyotrophic lateral sclerosis (ALS) treatment. The company said the U.S. Food and Drug Administration accepted its investigational new drug (IND) application after it submitted additional data the agency…
Often I do some of my deepest thinking when I’m alone in the car. I regularly drive 35 minutes to ride my horse, and I like to spend that time in silence. That’s when I think about people to contact or items on my to-do list for the week ahead.
New research is bringing mind-to-speech technology a step closer to reality for people with paralysis, including those with amyotrophic lateral sclerosis (ALS) who lose the ability to speak. A proof-of-principle study shows that a brain-computer interface (BCI) can translate a person’s silent thoughts into spoken words and could provide…
Last Sunday, on the morning of our 22nd wedding anniversary, as I was getting my husband, Todd, out of bed, he asked if I’d heard the song “To Build a Home.” I hadn’t. “Alexa, play ‘To Build a Home‘ by the Cinematic Orchestra and Patrick Watson,” Todd said.
I know I’ve said this many times, but it’s worth repeating: One of the most important lessons ALS has taught me is to never give up. This leads me into this week’s column. It’s a story about shoes and my pursuit of the perfect pair. Spoiler alert: There’s a…
A retrospective analysis using data from two clinical studies and their extension periods showed that Radicava ORS, an oral formulation of edaravone, slows functional decline and helps adults with amyotrophic lateral sclerosis (ALS) live longer. “This analysis provides additional data to help characterize functional outcomes and potential impact of…
A veterinary medication repurposed as a treatment for amyotrophic lateral sclerosis (ALS) helped patients live longer and slowed disease progression in a long-term clinical trial. The drug, NUZ-001 from Neurizon Therapeutics, was generally safe and well tolerated in the open-label extension (NCT06177431) study, which tested the treatment in…
China’s National Medical Products Administration has granted Sineugene Therapeutics permission to begin clinical trials of its gene therapy SNUG01 in people with amyotrophic lateral sclerosis (ALS), clearing the way for clinical trials. The announcement follows a similar decision by the U.S. Food and Drug Administration (FDA). It sets…
The second edition of ALS Nexus — a conference hosted earlier this month in Dallas by the ALS Association — brought together people from across the amyotrophic lateral sclerosis (ALS) community to connect with each other, celebrate recent advances, and share hope for the future. “What really…
Recent Posts
- 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
- ALS broke my independent streak and taught me how to ask for help
- Viral infection triggers ALS-like disease in mice with specific genes