Infusion therapy SLS-005 fails to slow ALS progression in trial

Remembering our active life in the early years of ALS

I recently connected with another spousal caregiver who wondered how I felt about life now that my husband, Todd, has had ALS for nearly 14 years. She’s just a few years into life with ALS, and her husband uses a power wheelchair and speech-generation technology and receives ventilation…

Ferrer to co-develop, market PIKfyve inhibitor VRG50635

Spanish pharmaceutical company Ferrer will co-develop and market Verge Genomics’ investigational PIKfyve inhibitor VRG50635 for the treatment of amyotrophic lateral sclerosis (ALS) in Europe, Central and South America, Southeast Asia, and Japan, under a collaboration agreement announced by the two companies. Ferrer will have exclusive co-development and commercialization…

Association conference features living with ALS as part of program

A conference in July will feature “diverse perspectives,” including patient presentations and discussions featuring people living with amyotrophic lateral sclerosis (ALS) along with clinical and research experts. That’s according to the ALS Association, which said its inaugural ALS Nexus Conference will be held July 14-17 at the Gaylord Texan Resort &…

Finding the best language to talk about disability

I recently came across a CNN opinion piece by writer s.e. smith titled “Jokes about disability aren’t taboo. But here’s who shouldn’t be telling them.” I read on, because my husband and I often use humor to deal with the difficulty of life with ALS, as Todd…