My Success with Grab Bar Acrobatics

Whenever I’m out and about running errands, I’m aware of the possibility I’ll need to make a quick stop at, ahem, the public restroom. But though I have ALS and rely on a mobility scooter, it has never been a problem. That’s because I have a mental list of handicapped-accessible…

A recently discovered inflammatory mechanism triggered by Schwann cells —  specialized cells that produce the protective myelin sheath around neurons —  in amyotrophic lateral sclerosis (ALS) can be alleviated with masitinib, a study in rat models shows. The study, “Schwann cells orchestrate peripheral nerve…

To help accelerate development of effective treatments for amyotrophic lateral sclerosis (ALS), the ALS Association is investing $3 million in the disease’s first platform trial. The award is $1 million annually for three years to support the platform investigation, a type of clinical study that evaluates the…

A recently completed Phase 1 trial studying NPT520-34 — an investigational small molecule being developed by Neuropore Therapies for the treatment of Parkinson’s disease and amyotrophic lateral sclerosis (ALS) — has shown the candidate to be safe and well-tolerated in a group of healthy volunteers. The…

The grief that accompanies ALS is multifaceted. I grieve my husband’s loss of function and the loss of our dreams. Just when we find a new normal, there is further decline. I let my grief out on the pages of my journal. I cry, I scream in the car when…

Dosing of healthy volunteers has been completed in a Phase 1 clinical trial evaluating Neos Therapeutics‘ experimental therapy NT0502 for chronic sialorrhea (excessive drooling), a common problem in people with amyotrophic lateral sclerosis (ALS). The open-label study includes 30 healthy adults who were assigned randomly to take one of…

In the coming months, Alexion Pharmaceuticals will launch a pivotal Phase 3 clinical trial to test its complement system inhibitor Ultomiris (ravulizumab) in people with amyotrophic lateral sclerosis (ALS) whose motor symptoms began in the prior three years. The CHAMPION-ALS trial — which follows an investigational new…

The new year arrived bearing good and bad news. The good news is that 2020 marks my 10th year of living with ALS and I’m still here! The bad news is that I still have ALS. And, gosh darn, I thought we’d have a cure by now. But we…

Including ALS Research Ambassadors — a group of amyotrophic lateral sclerosis (ALS) patients and their caregivers — in discussions about future clinical trial planning and design facilitates changes in study protocol that make the studies more patient-centered. That result is shown in the case of the REFINE-ALS trial, which is…

Amyotrophic lateral sclerosis (ALS) patients receiving the lowest dose of Kadimastem’s cell therapy candidate, AstroRx, experienced a significant reduction in disease progression in the three or four months after treatment, updated findings from the company’s Phase 1/2 clinical trial show. In subsequent…