How ‘Self-care Minis’ Help Me Through a Busy Day

I’m always on the lookout for self-care strategies that help me cope and live with my ALS. Recently, I added two quick and easy skills I call “self-care minis” to my ever-growing list. They help me stay cool and calm when I have a super busy day. Why do I…

The National Institutes of Health (NIH) has awarded a $450,000 grant to a university research team to explore mutations in the FUS gene that contribute to amyotrophic lateral sclerosis (ALS), and to study genes showing a potential…

A higher than expected proportion of amyotrophic lateral sclerosis (ALS) patients — most without a family history of ALS — had mutations in genes associated with the disease, according to a study in 100 patients in the U.K. “Our study found that 42 per cent of patients involved in…

The Muscular Dystrophy Association (MDA) is urging people with amyotrophic lateral sclerosis (ALS) to take part in a new study that’s seeking to track disease progression through a mobile app. In addition to ALS, the ongoing study is enrolling adults with primary lateral sclerosis (PLS) or related neuron…

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

After my husband, Todd, was diagnosed with ALS, we thought he would have at most five years to live. We started with only two major goals: take a family vacation together with our toddler and preschooler, and build an accessible home. We did both of those things within the…

Note: This story was updated April 6, 2021, to note that the study is expected to conclude late this summer, instead of 2024. The ALS Association, Muscular Dystrophy Association (MDA), and ALS Finding a Cure have given an additional $1.1 million to support work on a cell therapy…

“They’re gonna put me in the movies, They’re gonna make a big star out of me, … And all I gotta do is act naturally.” — Johnny Russell Two weeks ago, I referenced several catchphrases from…

Biogen will not offer early access to tofersen, its experimental therapy for familial amyotrophic lateral sclerosis (ALS) caused by mutations in the SOD1 gene, at least until data from its pivotal clinical trial are analyzed. Now in its Phase 3 portion, the study (NCT02623699) is testing the…

Retrotope has dosed the first patients in its recently-initiated Phase 2 clinical trial evaluating RT001 for the treatment of amyotrophic lateral sclerosis (ALS). Enrollment is open across four European sites for patients ages 20–75 whose disease symptoms began less than three years ago and do not need…