Mass General program shows feasibility of expanded access model

I walked with our dog, Comet, on a trail in the woods behind our house. The woods felt cool out of the hot sun. Light filtered through the trees overhead as I breathed in the rich smell of summer earth and pine. A ruffed grouse crossed our path, and…

More than one in 10 people with amyotrophic lateral sclerosis (ALS) harbor at least one known disease-causing mutation, according to a new profile from the Strategic ALS Australia Systems Genomics Consortium (SALSA-SGC). The multi-site research consortium brings together major ALS clinics across Australia to collect clinical data and biological…

A new wearable soft-glove device has successfully restored hand function in a man with amyotrophic lateral sclerosis (ALS), allowing him to grip objects and feed himself independently. The device was developed by a team of scientists in Germany who worked in direct collaboration with the patient himself. The man…

Neuralink, a company developing brain-computer interface (BCI) devices aimed at restoring independence to people with paralysis caused by conditions such as amyotrophic lateral sclerosis (ALS), has tested a new implant approach in which electrode threads were inserted through the dura without cutting it open. The dura is the…

A University of Melbourne spinout company is developing a less invasive brain-computer interface that could one day allow people with impaired speech, including those with amyotrophic lateral sclerosis (ALS), to communicate by attempting to say words. Unlike many current brain-computer interface prototypes, which can involve invasive surgery…

My husband, Todd, and I sat on the patio on a perfect summer day in Michigan’s Upper Peninsula. It was in the 70s and sunny, with a brisk wind that kept the mosquitoes and biting flies away. We looked out beyond our backyard to a field that had been a…

Incorporating muscle assessments from whole-body MRIs (WB-MRIs) into the diagnostic process for amyotrophic lateral sclerosis (ALS) may help identify the condition with a greater degree of certainty, according to a study from France. ALS causes damage to specialized nerve cells called motor neurons. Some criteria for diagnosing ALS…

I’m always on the lookout for examples of how other people successfully handle life’s big and little speed bumps. Because I need all the inspiration I can get, especially since my biggest speed bump is living with ALS. Little ALS bumps happen almost every day, constantly testing my resilience.

Oral amyotrophic lateral sclerosis (ALS) treatment PrimeC significantly reduced levels of TDP-43, a protein that abnormally accumulates in nearly all ALS cases, in a Phase 2b clinical trial. The PARADIGM study met its main efficacy goal of lowering TDP-43 levels in nerve cells relative to a placebo after six months.