The U.S. Food and Drug Administration (FDA) has granted orphan drug status to Sineugene Therapeutics‘ SNUG01, a gene therapy for people with amyotrophic lateral sclerosis (ALS). The designation is given to potential treatments for rare diseases, or those affecting fewer than 200,000 people in the U.S. It provides…

After my husband, Todd, was diagnosed with ALS, we moved closer to my parents because we knew we’d need their help as the disease progressed. We built an accessible home on the spot where their old barn had stood when I was growing up. We weren’t sure how much…

Mindy Uhrlaub, an author and activist for amyotrophic lateral sclerosis (ALS), has spent a good part of her life caring for loved ones. Soon after she became a mom in 2003, her husband learned he had cancer. “Right as my older son was taking his first wobbly steps, my…

The Longitude Prize on ALS is offering a total of £7.5 million (more than $10 million) to encourage scientists to use artificial intelligence (AI) to speed up the search for new treatments for amyotrophic lateral sclerosis (ALS), The entry window closes in early December. Over five years,…

Living close to water bodies with blue-green algae blooms, or cyanobacteria, is linked to significantly reduced survival among people with amyotrophic lateral sclerosis (ALS), according to a new study. The association was significantly stronger in people who used private well water or participated in water-related activities such as swimming…

After the loss of my beloved dog Rudder when he was 12 years old, a close friend observed with concern that she hadn’t seen me cry. It was true, I hadn’t shed any tears publicly, and even privately I sat with my grief quietly and alone. Rudder had gotten me…

Three years after its approval in the U.S., Radicava ORS (edaravone) has been prescribed by more than 1,300 healthcare providers to more than 13,500 people living with amyotrophic lateral sclerosis (ALS) in the country, according to the company that markets it. First approved as an into-the-vein infusion called…

“You really have everything figured out,” one of my husband Todd’s new caregivers said as I was helping her transfer him into bed using his overhead lift. We’ve been managing ALS and paralysis for a long time, and we continue to improve our processes for Todd’s nighttime care.

An experimental oral treatment from Zydus Lifesciences was well tolerated at all tested doses and showed signs of slowing disease progression in people with amyotrophic lateral sclerosis (ALS). That’s according to findings from a proof-of-concept Phase 2a trial (NCT05981040) in India that tested Zydus’ usnoflast in 24…