After my husband Todd’s ALS diagnosis in 2010, we regularly monitored the forced vital capacity (FVC) of his lungs. This was because the neurologist at our ALS clinic had told us that if Todd wanted to get a feeding tube, he’d need to do it while his FVC was…
People with ALS should be able to proactively get feeding tubes
China’s Center for Drug Evaluation (CDE) has approved a request by Zhimeng Biopharma to launch a Phase 2/3 study of its experimental therapy CB03-154 in people with amyotrophic lateral sclerosis (ALS). The oral treatment, which is designed to slow disease progression by reducing nerve cell overactivity, is also…
I used to take for granted my ability to sync up with the people and events in my life — to keep up with conversations, move in unison with my fellow dancers, and show up on time. But that was before ALS waltzed into my life. At first, the…
Anita Newton is a retired science teacher who lives near Bristol, England. She taught chemistry for 30 years before retiring when her husband, Craig, was diagnosed with ALS. Her interests range from sports like pickleball, badminton, and table tennis to reading, writing, painting, and crafting. She also enjoys traveling…
The U.S. Food and Drug Administration (FDA) has granted orphan drug status to Klotho Neurosciences’ gene therapy candidate for amyotrophic lateral sclerosis (ALS). The designation is intended to boost the development of potential treatments for rare diseases, or those that impact fewer than 200,000 people in the U.S. It…
A new treatment approach that noninvasively delivers gentle electrical stimulation to the spinal cord and peripheral nerves — the nerves that connect the brain and spinal cord to the rest of the body — was found to slow disease progression and extend survival in a mouse model of amyotrophic…
A coalition of amyotrophic lateral sclerosis (ALS) patients and their family members has filed a petition to the U.S. Food and Drug Administration (FDA) asking the agency to review again available data for the stem cell therapy NurOwn (debamestrocel). The petitioners include ALS patients who received NurOwn in…
In 2012, two years after my husband, Todd, was diagnosed with ALS, he and I made a trip to a larger town a couple hours away to pick out fixtures and appliances for our new accessible home. After purchasing the items and scheduling the delivery, we headed back to…
Neurizon Therapeutics has entered into a global licensing deal with Elanco Animal Health to advance the development of NUZ-001, an investigational therapy for amyotrophic lateral sclerosis (ALS). Monepantel, the active ingredient in NUZ-001, is an oral deworming agent commonly used in veterinary medicine, and Elanco, a company that…
Navigating life with ALS is a journey, and for many of us, it comes with an extra passenger: health anxiety. Before my diagnosis, I thought my good health would continue forever. But now, along with learning to live with ALS, I also deal with a mild case…
Recent Posts
- ‘Early birds’ have significantly lower ALS risk than ‘night owls’: Study
- As my late husband’s ALS progressed, we kept our bucket list simple
- Tossing and turning over fears this ALS journey has come to its end
- Experimental ALS therapy QRL-201 shows potential to slow disease decline
- Worried about an inability to multitask? Here’s what helped me.