“Won’t you look down upon me, Jesus?/ You gotta help me make a stand./ You just got to see me through another day./ My body is achin’ and my time is at hand./ I won’t make it any other way.”…

It’s always gratifying to know what I write is helpful to others living with ALS. Recently, I wrote about how I periodically take the time to review my daily habits and set new goals for the month. While readers left many comments thanking me, others asked if I had…

October is International Augmentative and Alternative Communication (AAC) Awareness Month, set aside annually to inform the public about how amyotrophic lateral sclerosis (ALS) patients and others use these devices to communicate. From educational presentations to personal videos, supporters globally are marking the event organized by the International…

We had an unseasonably warm fall day while Todd’s sister was visiting from out of state last week. I asked Todd if he’d want to head down to McLain State Park just 15 minutes from our home. “I suppose,” he said somewhat reluctantly. He wanted to be social even…

“What do we do now?” That line from the 1972 movie “The Candidate” came to mind recently. The movie stars Robert Redford as a political neophyte. Redford’s character, Bill McKay, is offered as a sacrificial lamb…

A Phase 2 and potentially pivotal study investigating pegcetacoplan (APL-2) as a potential treatment for amyotrophic lateral sclerosis (ALS) is now enrolling patients, Apellis Pharmaceuticals, the therapy’s developer, announced in a press release. The MERIDIAN trial (NCT04579666) is enrolling up to 228 adults with sporadic ALS and…

We had snow in the air last week, reminding me that Christmas is coming, and with it, one of my favorite creative projects: wreath-making. I’ll start clipping the Fraser fir boughs and assembling the wreaths in November, but in the meantime, I’ve been gathering pine cones. I’ve been wiring…

No one applauds when the train is on time. That was the metaphor I invoked during the portion of my career spent in system implementation and post go-live support organizations within the pharmacy automation industry. I suggested that ensuring uptime was…

Happy October, everyone! It’s time for a mini-celebration. During this crazy year, each new month means more of 2020 is behind us. We have all undergone change over the months, especially those of us facing the challenges of ALS. However, our changes extend indefinitely. Maintaining my resilience is a priority.

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…