Amyotrophic lateral sclerosis (ALS) is a neurodegenerative condition characterized by progressive muscle weakness and wasting. In some cases, breathing difficulties are among the first symptoms of ALS, as the chest muscles and diaphragm that control breathing become affected by the disease. In other patients, breathing difficulties may only…
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…
Being a caregiver for a spouse with ALS is a heavy load, and at some point it becomes too much for one person to handle. When ALS took from my husband the ability to walk, I helped him move from his wheelchair to the bed. He would sleep most of…
A week ago last Sunday, I spent a portion of the day, as I often do, going to church. Well, not quite “going.” Owing to the challenges of readying and transporting me, I participate in worship via a livestream of the service. The…
If you’ve ever used the drive-thru lane to order a meal, then you know that the experience can range from easy to downright annoying. My husband and I have suffered through fast-talking order-takers with squeaky voices, but when we encounter the dreaded malfunctioning speaker, we know that we’re in for…
Synchron Inc. has successfully completed the first brain implantation of the Stentrode as part of a clinical feasibility trial. The first-in-human study is designed to assess the potential of this technology to restore communication in patients who suffer from severe paralysis, including those with amyotrophic lateral sclerosis (ALS). The Stentrode…
Spoiler alert: This column describes plotlines from the film “The Art of Racing in the Rain.” Friday movie night has become our favorite pastime, as it’s something we can still enjoy as a family despite my husband Todd’s paralysis. We typically find a funny movie on Netflix or Amazon Prime.
Daiichi Sankyo is looking to market the amyotrophic lateral sclerosis (ALS) treatment Radicava (edaravone) in Brazil after reaching a licensing agreement with the therapy’s maker, Mitsubishi Tanabe Pharma. The company will submit a regulatory application through its local subsidiary, and expects to commercialize Radicava in the…
My husband and I recently took a short trip out of town. On the morning we left, it dawned on me that I was going to have one of those days. You know the kind. A day when one thing after another gets in the way. The culminating moment happened…
The benefits of riluzole, an approved treatment for amyotrophic lateral sclerosis (ALS), is thought to partly lie in its antioxidant effects. A new study now reports that this activity can be enhanced by combining it with agents like Radicava that provide protection via different pathways. The study, “…
