A group of experts, led by scientists from the National Institute of Neurological Disorders and Stroke (NINDS), has published a set of strategic priorities for the amyotrophic lateral sclerosis (ALS) community that are expected to guide future research funding. The goals include better understanding the biology underlying ALS, finding…
Significant delays in the diagnosis of amyotrophic lateral sclerosis (ALS) were revealed by a new large-scale analysis of real-world patient records using artificial intelligence (AI). In fact, the median time from the first symptom to an ALS diagnosis was 11 months for these patients. Similar delays were seen regardless…
A widely used saying in the English lexicon, “Hope springs eternal,” was coined by the poet Alexander Pope to simply suggest that hope is always available to us. It means a great deal to patients with rare, fatal diseases and our loved ones to know that hope is…
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…
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