Activities and Events Underway for AAC Awareness Month

Activities and Events Underway for AAC Awareness Month

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…

Our Bittersweet Family Life

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…

€1 Million Contest Seeks to Improve Functionality in ALS

With a €1 million (about $1.1 million) prize being offered, researchers are invited to join a challenge that seeks to give people with motor neuron diseases (MND) – including those with amyotrophic lateral sclerosis (ALS) – improved independence and a more normal lifestyle. The Cullen Education and…

What’s Next After Your Ship Comes In?

“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…

Phase 2 Study of Pegcetacoplan in Recently Diagnosed Patients Opens

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…

Creativity Is a Life-giving Activity

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…

Scribe, Biogen Partner to Develop Gene Therapy for ALS, Other Neurological Diseases

Scribe Therapeutics and Biogen, a biotechnology company focused on neurological diseases, have established a research partnership to develop new gene therapies for amyotrophic lateral sclerosis (ALS) using the gene-editing technology CRISPR-Cas9. The collaboration will focus initially on the development and commercialization of CRISPR-based therapies that address some…