Perspective from Robert Bucelli, MD, PhD Dr. Robert Bucelli is a professor and neurologist at Washington University in St. Louis. He consults and cares for many people with ALS at the school’s world-renowned ALS Center. Dr. Bucelli is a paid consultant for Biogen and was compensated for this article.
I’m always on the lookout for strategies that will help me make my life with ALS go a little bit smoother, and I’ve recently found a new one. It’s easy to do and, most importantly, it adds a layer of calm to my days. It might surprise you when…
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ACI-19626, an experimental compound designed to be used as a PET tracer, can selectively bind to abnormal clumps of the protein TDP-43, a hallmark of amyotrophic lateral sclerosis (ALS), but not to normal TDP-43 protein, preclinical research showed. Based on the promising early findings, ACI-19626’s developer, AC Immune,…
SPG302, an experimental oral therapy for amyotrophic lateral sclerosis (ALS), was well tolerated in an early clinical trial, and initial findings suggest it may help slow disease progression. The new data come from a Phase 1/2a study (NCT05882695) conducted in Australia. The first parts of the study tested…
After my husband, Todd, was diagnosed with ALS, I was shattered and desperate to connect with others who might understand the pain I was feeling. I searched online for a local grief group and found one that met at a nearby church. But when I called to ask about…
Target ALS has released a short documentary that follows the deeply personal journey of Dan Doctoroff, the organization’s founder and a person living with amyotrophic lateral sclerosis (ALS), as he works to change the future of ALS research. The 17-minute film, “Everyone Lives: Turning Vision Into Reality,”…
I was never a foodie. Never one to order the lobster gnocchi, a bone marrow rice bowl, or smoked mackerel wrapped in bacon. My preferences were always more pedestrian. Chicken nuggets and tater tots. Fast food hamburgers with a pile of stringy fries. Giant mall cinnamon buns as thick as…
The Robert Packard Center for ALS Research at Johns Hopkins and ALS United will fund a preclinical study investigating how TDP-43 abnormalities contribute to amyotrophic lateral sclerosis (ALS). The project, “Alternative Polyadenylation-Driven Subcellular RNA Mislocalization in TDP-43 Proteinopathies,” will explore the molecular mechanisms by which TDP-43 clumps,…
I’ve been helping my husband, Todd, ever since he was diagnosed with ALS more than 15 years ago. It started with me buttoning his dress shirts before he went to work, and then I helped him shave. Eventually, he needed my help with eating, toileting, showering, scratching itches, adjusting…
