The Adira Foundation is inviting people with neurodegenerative diseases and their caregivers to join a grant proposal review committee. A nonprofit foundation, its mission is to unite people affected by some of most common neurodegenerative diseases — namely, amyotrophic lateral sclerosis, multiple sclerosis, Alzheimer’s disease, Huntington’s disease, and…

“We were ill-prepared and unequipped for the hike,” I told my husband, Todd, after returning home. The kids and I went to see Douglass Houghton Falls in Michigan’s Upper Peninsula with my friend, who was visiting from out of town. Todd stayed home because he has ALS and is…

“Ch-ch-ch-ch-changes (turn and face the strange), Ch-ch-changes, just gonna have to be a different man.” — David Bowie Many people dislike change, some to the point of fearing it. According to author and motivational speaker Scott Mautz, writing for Inc.com, “Overcoming a fear of change can be as…

Mast cells, a type of immune cell, infiltrate the spinal cord of amyotrophic lateral sclerosis (ALS) patients and rodent models of the disease, exhibiting pro-inflammatory features that are likely involved in motor neuron and microvasculature damage, a study suggests. Notably, treating these mice models with masitinib — an experimental oral…

Eledon Pharmaceuticals announced that its Phase 2 study of AT-1501 in people with amyotrophic lateral sclerosis (ALS) should be fully enrolled by year’s end. Top-line trial results are expected between April and September 2022. “Enrollment in our ALS study is progressing well and we anticipate completing enrollment in…

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…

I love daily routines. For me, having a set of habits and to-do projects waiting to be tackled helps me feel grounded when the world’s events are in turmoil. And more importantly, daily routines keep my mind focused on things other than my ALS. What I don’t love are disruptions,…

I pleaded. I bargained. I threatened. But it was no use. My dog would not back away from the woods behind the shed, where he had been sprayed by a skunk just two weeks earlier. I was more panicked when he got skunked than I was now. I frantically searched…

Clene, and its wholly owned subsidiary Clene Nanomedicine, have signed two lease agreements that will more than quadruple the manufacturing capacity of CNM-Au8, their investigational therapy for people with amyotrophic lateral sclerosis (ALS). The first lease is for a 10-year agreement for a 74,210-square-foot building in Elkton, Maryland.

This past week was filled with voices. No, I wasn’t hearing voices in my head. But everything seemed to involve a voice. Let me explain. An action hero uses his voice I watched the newly released documentary “Val,” currently streaming on Amazon Prime Video. By the time the final…