Just Showing Up Is an Accomplishment

Years before my husband was diagnosed with ALS, I coordinated a tutoring program in Milwaukee. Many of the children and teens I worked with lived with stress and instability in their homes and neighborhoods. For some kids, just consistently showing up to school and the tutoring program was an accomplishment…

“You don’t tug on Superman’s cape, You don’t spit into the wind, You don’t pull the mask off the old Lone Ranger, And you don’t mess around with Jim.” Based on recent events, I might add…

Seelos Therapeutics has received a notification from the U.S. Food and Drug Administration (FDA) permitting the launch of its Phase 2b/3 clinical trial investigating SLS-005 (trehalose) as a treatment for amyotrophic lateral sclerosis (ALS). Seelos plans to enroll 160 patients with either familial or sporadic…

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…

AC Immune is planning to advance its investigational anti-TDP-43 antibody into clinical testing for neurodegenerative diseases, like amyotrophic lateral sclerosis (ALS), in which TPD-43 protein aggregates play a major role in brain damage. The company announced the start of preclinical studies into this first-in-class antibody. This work will…

Weeks after my husband’s ALS diagnosis, we were still in shock, but we mustered ourselves for a family outing on my 33rd birthday. We planned the day around our baby’s nap schedule. With only one weak arm, my husband, Todd, drove me, our 4-year-old daughter, and 11-month-old son to the…

The first platform trial for amyotrophic lateral sclerosis (ALS), designed to assess multiple treatment candidates simultaneously with a goal of accelerating the development of ALS therapies, has enrolled its first patients. The HEALEY ALS Platform Trial (NCT04297683) will start by evaluating UCB’s…