The thoughts that follow when living with ALS and a virus

15 nonprofits join to form new ALS group, ALS United

Fifteen nonprofit organizations across the U.S. formed a new ALS group, ALS United, to better address the needs of people living with amyotrophic lateral sclerosis (ALS) and drive advances in research toward better treatment options or a cure. The groups said they plan to pool resources to support…

Neighborhood disadvantage linked to shorter survival time in ALS

Neighborhood disadvantage, or living in regions with poorer socioeconomic conditions, is significantly associated with shorter survival time among people with amyotrophic lateral sclerosis (ALS), according to a new Michigan-based study. For those living in neighborhoods considered to be among the top 10% of the most disadvantaged, survival was reduced…

IFB-088 slows disease progression in bulbar-onset ALS trial

Oral therapy IFB-088 (icerguastat) was safe and significantly slowed disease progression in certain people with amyotrophic lateral sclerosis (ALS), according to new data from a Phase 2 clinical trial. “We are very encouraged by the results we observed with IFB-088,” Pierre Miniou, CEO of IFB-088’s developer Inflectis Bioscience,…

I love finding bonus uses for ALS equipment

This afternoon, I loaded our household trash into the back of my husband’s accessible van. After opening the rear hatch and lowering the ramp, I simply dragged our three 33-gallon trash cans up the ramp to where Todd would normally park his power wheelchair, then I drove to the transfer…