Having access to results from prognostic tests — including neurofilament light chain (NfL) and the ALS Functional Rating Scale-Revised (ALSFRS-R) — is informational, personally relevant, and relevant to research for people with amyotrophic lateral sclerosis (ALS), a study suggests. The perceived burden related to receiving the tests results was…

This year’s Atlanta Night of Hope Gala will showcase how patient April Byars has been navigating life since her ALS diagnosis. The gala, which is hosted by the Muscular Dystrophy Association (MDA) to raise funds for amyotrophic lateral sclerosis (ALS) research is now in its 18th year.

“I’m not going to write a column this week,” I told my husband, Todd. “All I can think about is that you’re sick, and I don’t know how it’s going to turn out.” Todd came down with a bug a few days ago. He’s had body chills, aches, and congestion.

Fifteen nonprofit organizations across the U.S. formed a new ALS group, ALS United, to better address the needs of people living with amyotrophic lateral sclerosis (ALS) and drive advances in research toward better treatment options or a cure. The groups said they plan to pool resources to support…

Who would’ve guessed that wearing a pair of ankle-foot orthoses (AFOs) while on a simple haircut trip would turn into a near disaster? But with two mini-miracles and one big lesson about living with ALS, the day was saved. Although I can tell this story in many ways, I…

Neighborhood disadvantage, or living in regions with poorer socioeconomic conditions, is significantly associated with shorter survival time among people with amyotrophic lateral sclerosis (ALS), according to a new Michigan-based study. For those living in neighborhoods considered to be among the top 10% of the most disadvantaged, survival was reduced…

Oral therapy IFB-088 (icerguastat) was safe and significantly slowed disease progression in certain people with amyotrophic lateral sclerosis (ALS), according to new data from a Phase 2 clinical trial. “We are very encouraged by the results we observed with IFB-088,” Pierre Miniou, CEO of IFB-088’s developer Inflectis Bioscience,…

A clinical trial that will test a noninvasive, nerve-modulating device called MyoRegulator — designed to slow disease progression in people with amyotrophic lateral sclerosis (ALS) — has been cleared to start patient enrollment in the U.S. That green light, from an Institutional Review Board, will allow Pathmaker…

People with amyotrophic lateral sclerosis (ALS) who choose invasive ventilation to help with breathing less frequently require opioids to manage their symptoms compared with ALS patients who remain on noninvasive ventilation or have no ventilatory support at all, according to a new study by researchers in Japan. Opioid use…

This afternoon, I loaded our household trash into the back of my husband’s accessible van. After opening the rear hatch and lowering the ramp, I simply dragged our three 33-gallon trash cans up the ramp to where Todd would normally park his power wheelchair, then I drove to the transfer…