My principles for finding and giving support in the ALS community

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.

As part of preparations for a Phase 3 clinical trial to test its experimental therapy, masitinib, in people with amyotrophic lateral sclerosis (ALS), AB Science has purchased a unique insurance policy. This type of insurance — called clinical trial funding insurance, or CTFI —…

It’s well established that some cases of amyotrophic lateral sclerosis (ALS) are caused by mutations that are inherited from a person’s parents — but a new study shows some cases of sporadic ALS may be caused by mutations that are not inherited, and instead occur spontaneously in developing…

I brought “Some Bright Nowhere” by Ann Packer with me to Florida as my spring break beach read, but it wasn’t exactly light material. It’s a novel about a woman dying of cancer. Columnist Kristin Neva’s spring break beach read was “Some Bright Nowhere” by Ann Packer. (Photo by…