Genetic ALS: Discussing a difficult diagnosis

In ALS, statin use not related to patient survival, study finds

Taking statins to lower cholesterol does not affect survival outcomes for people with amyotrophic lateral sclerosis (ALS), researchers in Norway have found. In a study of ALS patients using national health registry data, the scientists compared the life expectancy of statin users and nonusers. According to the team, “statin use…

FDA approves study of SNUG01 gene therapy for ALS patients

The U.S. Food and Drug Administration (FDA) has authorized Sineugene Therapeutics to begin a Phase 1/2a trial of its experimental gene therapy, SNUG01, in people with amyotrophic lateral sclerosis (ALS). The global trial will assess the treatment’s safety, tolerability, and preliminary efficacy through a dose escalation and expansion…

Californians can help fund ALS research through tax contributions

People living in California can help fund amyotrophic lateral sclerosis (ALS) research when filing their state taxes. The California ALS Research Network Voluntary Tax Contribution Fund allows Californians to contribute to research projects selected by the ALS Network’s scientific advisory committee. At least $250,000 must be raised…

How we’re living in the middle chapters of ALS

It’s hard to live in limbo with the slow but relentless progression of my husband Todd’s ALS. A couple years after Todd was diagnosed, he went on permanent disability from his work. He could still speak and had the time, so he visited my great-uncle nearly every day…