Out-of-pocket ALS costs create heavy financial burden for French families

In France, the average family impacted by amyotrophic lateral sclerosis (ALS) has to pay thousands in out-of-pocket expenses to cover such things as mobility aids and paid caregivers — and because patients and caregivers often need to stop working to manage the disease, these expenses pile up on top…

RAG-17, an experimental treatment Ractigen Therapeutics is developing for people with amyotrophic lateral sclerosis (ALS) who carry a SOD1 mutation (SOD1-ALS), was well tolerated at multiple doses and led to profound changes in disease biomarkers, preliminary trial data showed. The data cover the first part of an ongoing…

Deaths from amyotrophic lateral sclerosis (ALS) have nearly doubled in Finland over the past three decades, with increases in mortality seen especially among older adults, according to a new study. The reasons for this trend aren’t clear, however, and the researchers noted that similar increases have not been reported…

In the early, scary months after my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I started to realize that I had no idea what we were up against. At almost 50 years old, I’d heard of ALS only through the Ice Bucket Challenge and…

The Muscular Dystrophy Association (MDA) will return to New York City on June 4 for its 26th annual Wings Over Wall Street Gala. Hosted at 48 Wall Street Events, the high-profile fundraiser unites the financial community and medical researchers to accelerate the search for a cure for amyotrophic…

When we got our goldendoodle, Comet, as a puppy almost 13 years ago, my husband, Todd, walked him around our property line to train him to stay close to home. After Todd became unsteady on his feet, he tooled around our yard on a scooter with Comet riding between his…

Maintaining body weight after starting enteral nutrition, or tube feeding, may help extend survival in people with amyotrophic lateral sclerosis (ALS), a study in Japan suggests. In an analysis of 121 patients, those with smaller weight declines after starting tube feeding lived significantly longer, regardless of calorie intake at the…

I’ll admit that there were times when I simply wanted to toss my ankle-foot orthoses (AFOs) into the trash bin and be done with them. In the early years after my ALS diagnosis, those braces represented one more massive change in my life that I had to learn to…

Nearly half of the people with amyotrophic lateral sclerosis (ALS) treated with masitinib in a clinical trial survived for at least five years from disease onset — a marked improvement over historical data showing fewer than 1 in 4 ALS patients typically live this long — indicating what…

Long-term exposure to air pollution is not associated with an altered, or increased, risk of amyotrophic lateral sclerosis (ALS). That’s according to a new study from the U.K. that used data from more than 500,000 people in the European nation who were followed, on average, for nearly a decade.