Positive Rituals and My Evolving Morning Routine

Ten years ago, if you had asked me how I was feeling when I woke up in the morning, I would’ve ignored you and disappeared beneath the blankets. That was during my first year with ALS, a time when I felt the weight of worry and having a life…

Maltese people with amyotrophic lateral sclerosis (ALS) do not exhibit mutations in the genes commonly associated with the condition, a study found. Instead, their disease-causing mutations are found in genes rarely associated with the condition in Europeans. The study, “…

With a new version of a low-cost eye-tracking system called EyeWriter, artists and others who are paralyzed due to amyotrophic lateral sclerosis (ALS) can more accurately draw and create images using only their eyes. The latest EyeWriter 2.0 software improves the system’s accuracy and now also allows the…

BrainStorm Cell Therapeutics met with U.S. Food and Drug Administration (FDA) officials regarding its plans for a semi-automatic manufacturing process for NurOwn, the company’s investigational cell-based therapy for amyotrophic lateral sclerosis (ALS). Discussion at the meeting — formally called a type C meeting — covered issues that…

Some people take a long time to get an ALS diagnosis, which is a drawn-out, stressful journey. Our story was stressful in a different way, in that my husband’s diagnosis came almost too quickly. In the fall of 2009, Todd first noticed that his left arm was becoming weak.

Cytokinetics awarded two amyotrophic lateral sclerosis (ALS) patient advocacy organizations grants worth $20,000, in recognition of their efforts to support their disease communities through communications, awareness, and outreach. The grants, part of the Cytokinetics’ annual Communications Fellowship Grant program, aid projects that reach underserved populations, provide assistive…

The 1987 song “Elvis Is Everywhere” by Mojo Nixon and Skid Roper asserts the omnipresence of Elvis Presley. Despite the first-glance outlandishness of the song’s premise — fittingly, the single is found on the album titled “Bo-Day-Shus!!!” — I am…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

I’m often asked by others in the ALS community for tips and insight from my past 10 years of living with ALS. While I am grateful for both making it this far while maintaining most of my physical abilities, I am by no means an expert. ALS symptoms differ…

Stretchable electronics that are “intrinsically” stretchable — meaning they have tissue-like mechanical properties that integrate sensory devices with human skin — can better detect signals from a patient’s body than current, more rigid sensors, a study suggests. For now, its researchers are looking into a design for these electronics as a…