Among the various problems of life that families experience is the occasional exclusion of children from conversations. I remember hearing the older members of our family saying, “This is grown-folks’ business.” They’d tell us children to go outside and play. Depending on the age of a child, that might have made sense and could still be true today. But I submit that when it comes to a parent being stricken with ALS, the grown folks may want to reconsider their position on involving their children as early as it is reasonable to do so. A few studies on this topic are accessible online, so I wi ..read more

Scientists at Stony Brook University aim to create a caregiving robot assistant (CART) to help people with amyotrophic lateral sclerosis (ALS) and their caregivers with everyday tasks. Led by I.V. Ramakrishnan, PhD, a professor of computer science and associate dean at the university’s College of Engineering and Applied Sciences, the project will be developed by a multidisciplinary team that includes experts in computer science and artificial intelligence technologies, engineering, and nursing. The project will be funded by a $1.5 million, three-year grant from the U.S. Army and will include ..read more

“It was easy, fun, and I’d do it all over again.” I know those are not the typical words used by someone who just finished participating in a research study, especially one focused on ALS. But that’s exactly how I felt last week when I pressed the submit button on my final voice recording for the Speech Accessibility Project. Readers of this column will know that, because I have ALS, one of my quests is to prevent my ALS-related dysarthria from robbing me of my ability to speak. My other quest has been to support efforts to improve how voice-activated devices respond to voices like mine ..read more

Having possible symptoms of amyotrophic lateral sclerosis (ALS) increases the chances of getting an ALS diagnosis by nearly five times, but getting diagnosed is more likely for people in urban areas, who have greater access to specialized care, a U.S. study shows. People in rural areas are diagnosed at a later age and their diagnosis is more dependent on major ALS-specific symptoms, such as muscle weakness and difficulty swallowing or speaking. The findings underscore the “need to accelerate the detection-to-diagnosis timeline of ALS,” particularly for underserved populations in rural areas ..read more

While women with amyotrophic lateral sclerosis (ALS) see a faster functional decline, men have shorter survival times, mostly due to more rapid weight loss and lung function worsening, a study shows. The findings highlight the importance of considering sex-specific differences when studying the mechanisms leading to ALS and when designing individual  treatment plans. The study, “Sex Differences in Amyotrophic Lateral Sclerosis Survival and Progression: A Multidimensional Analysis,” was published in Annals of Neurology. ALS tends to develop earlier and is more frequent in men than women ..read more

When I look back at photos from when my late husband, Jeff, was living with ALS — something I do often to find inspiration for this column — I’m struck by how many of our happier memories took place outdoors, even in the advanced stages of Jeff’s illness. I guess that shouldn’t surprise me. Before his ALS, we were outside all the time. When the condition became a part of our lives, we didn’t think to change that, nor was there any immediate reason to. I vividly remember the day his diagnosis was confirmed via a second opinion in Baltimore. Once we arrived home, we instinctively sought solace ..read more

The Gary E. Shealy Memorial ALS Clinic in Tennessee has received a $75,000 grant from the ALS Association to support expanding its clinical care services for people with amyotrophic lateral sclerosis (ALS). The clinic at East Tennessee State University (ETSU) Health is the only one in the state that offers free multidisciplinary care to ALS patients. Established in partnership with the ALS Association, it relies on voluntary work from different specialty clinicians, serving nearly 100 patients across thousands of visits. The award, which coincided the clinic’s seventh anniversary, should ..read more

A decade ago, I purchased a fireproof lockbox to secure important papers, such as birth certificates, Social Security cards, and passports. I also stored several necklaces that my husband, Todd, had given to me, along with two watches he’d worn before he got ALS. Over the years, I added other random documents to the box, such as vaccination records and even a few love letters Todd had written to me. Retrieving a document from the box earlier this week, I noticed a foul odor. I flipped through the items and found Todd’s old watch bands covered with a dusty brown powder. Mold had infested our p ..read more

Treatment with Qalsody (tofersen) in the real world slowed disease progression in people with amyotrophic lateral sclerosis (ALS) caused by SOD1 mutations, a small study reports. It also stabilized patients’ quality of life and lowered levels of nerve damage-related biomarkers, which is consistent with clinical trial data that supported its approval. “Treatment with [Qalsody] was shown to be an effective therapeutic approach,” the researchers wrote in “Effects of tofersen treatment in patients with SOD1-ALS in a “real-world” setting – a 12-month multicenter cohort study from the German early ..read more

A double-blind Phase 2 clinical trial that will test Corcept Therapeutics’ oral cortisol modulator dazucorilant against a placebo in people with amyotrophic lateral sclerosis (ALS) is now fully enrolled, the company announced in a press release. Called DAZALS (NCT05407324), the trial involves 249 adults with sporadic or familial ALS across multiple sites in the U.S. and Canada, and in Europe. Participants are randomly assigned to receive one of two dazucorilant doses (150 or 300 mg), or a placebo, with neither researchers nor patients knowing who gets which one. Treatment is given as fou ..read more