Watching a Film About Robots on Mars Through the Lens of ALS

Now that my husband, Todd, is paralyzed and uses a noninvasive ventilator, leaving the house is too hard on him. So when we have a date night, we watch a movie at home. Last weekend, we watched “Good Night Oppy,” a documentary about twin rovers that NASA…

The U.S. Food and Drug Administration (FDA) has announced an advisory committee meeting seeking advice on whether to approve Biogen‘s investigational therapy tofersen for the treatment of amyotrophic lateral sclerosis (ALS) caused by SOD1 gene mutations. The public meeting, to be held online March 22, by…

Neopharm has acquired exclusive rights to commercialize AMX0035 (sodium phenylbutyrate and taurursodiol) in Israel, Gaza, the West Bank, and to the Palestinian Authority as a treatment of amyotrophic lateral sclerosis (ALS). The company’s agreement with Amylyx Pharmaceuticals makes it responsible for the distribution and marketing of AMX0035…

I always love having a good “aha!” moment, especially when it helps improve how I manage my ALS symptoms. Better yet is when I learn that what I thought was a symptom of ALS was actually an impostor, the result of something called “learned nonuse.” Here’s what happened.

An oral suspension form of Radicava (edaravone), an approved treatment of amyotrophic lateral sclerosis (ALS), was favored for patient reimbursement in Canada by a branch of the Canadian Agency for Drugs and Technologies in Health (CADTH). The opinion issued by the CADTH Canadian Drug Expert Committee recommended that Radicava Oral…

The Muscular Dystrophy Association (MDA) has invested $600,000 in PathMaker Neurosystems to help bring a potential noninvasive neuromodulator for amyotrophic lateral sclerosis (ALS) into an initial clinical trial. Funding through the MDA Venture Philanthropy (MVP) program will support an early feasibility study in a small…

What are your plans for this year? What are they for next month? Will you do something you have always wanted to do? Will you do anything different from your usual way of life? After all, it is yet another new year and we want to have a happy…

Inflamed Pharma, part of the incubator and accelerator company Xlife Sciences, is partnering with researchers at the University Medical Center Gottingen in Germany to develop its investigational therapy ProcCluster for the treatment of amyotrophic lateral sclerosis (ALS). The collaboration, led by Jan C. Koch, MD, a principal investigator…

My husband, Todd, is increasingly dependent on a noninvasive ventilator as ALS continues to weaken his lungs. Over the past decade as the disease progressed, I’ve had periods of high stress before we adapted to a new normal, such as when Todd continued to drive even though he…

Scientists have developed a new method that allows them to grow mature nerve cells from stem cells — a technique that could be applied to study diseases like amyotrophic lateral sclerosis (ALS). “For the first time, we have been able to see adult-onset neurological protein aggregation in the stem…