In designing an accessible home, we must consider livability

If we’d anticipated my husband, Todd, needing nighttime caregivers, we would’ve designed our accessible house differently, but we probably wouldn’t have been as happy with it. After Todd was diagnosed with ALS in 2010, he told me, “We need to sell the house. We need to move near…

Human motor neurons rely on a specialized molecular architecture to help support their large size, which may partially explain why they are more vulnerable than other nerve cells to damage in amyotrophic lateral sclerosis (ALS). That’s according to the study, “A cellular taxonomy of the adult…

Seelos Therapeutics has finished enrolling patients in its Phase 2/3 clinical trial of SLS-005 to treat amyotrophic lateral sclerosis (ALS), the company announced. The ongoing trial (NCT05136885) recruited 160 patients with familial and sporadic ALS, and top-line results are expected by the second half of…

Growing up, I always associated the month of February with Valentine’s Day, a holiday filled with hearts and flowers. But now that I live with ALS, the holiday is nowhere near as important to me as Rare Disease Day on Feb. 28. ALS is among the many…

A small Phase 2 clinical trial is evaluating the safety and tolerability of investigational treatment candidate EPI-589 in adults with amyotrophic lateral sclerosis (ALS). The EPIC-ALS trial (jRCT2061210031), being conducted in Japan, will also assess exploratory effectiveness outcomes after six months of treatment. Data collection began in September…

A wearable robotic device that helps lift the shoulders to support arm movements can make it easier for people with amyotrophic lateral sclerosis (ALS) to do daily tasks, a new study reports. Using the lightweight device — now a fabric-based robot prototype — led to significant improvements in upper…

When baseball legend Lou Gehrig was diagnosed with ALS in 1939, unfortunately, not much about the disease was being discussed at the time. Instead, Gehrig’s career and baseball prowess dominated the news and public discourse. His larger-than-life persona was well deserved, but his illness was also larger than…

While my late husband, Jeff, was living with ALS, there was a place where we both felt supported and hopeful, his disease understood. Driving through the streets of Baltimore as we wound our way toward the Johns Hopkins ALS Clinic, I could’ve felt trepidation, as sometimes on clinic…

The Phase 2b trial testing PrimeC in people with amyotrophic lateral sclerosis (ALS) will no longer enroll patients in the U.S., its maker NeuroSense Therapeutics has announced. Meanwhile, the company has been given the green light from regulatory agencies in Germany and Canada to enroll new participants,…

More than a dozen years ago, my friend Jana helped me process my grief after my husband, Todd, was diagnosed with ALS. She and I walked around our neighborhood, pushing our babies in strollers as our toddlers rode their bikes. Jana listened and didn’t offer platitudes. We now…