Despite the lows of a respiratory illness, we’re fighting for more time

It’s been a rough couple weeks since my husband, Todd, came down with a respiratory illness. The first weekend was the worst, with nausea, fever, chills, body aches, and chest congestion. By day four, he was able to eat a bit, and he spent longer stretches of the day…

Sleep problems may become evident in people with amyotrophic lateral sclerosis (ALS) several years before the characteristic motor symptoms of the disease develop, a new study shows. The study suggests alterations in a brain region called the hypothalamus, which are seen in early disease stages and sometimes even…

Voyager Therapeutics will reassess its gene therapy program for amyotrophic lateral sclerosis (ALS) associated with mutations in the SOD1 gene after its original candidate, VY9323, was found to have toxic effects in nonhuman primate studies. The company believes the problem lies with the therapy’s payload and not the viral carrier…

The ALS Association, a U.S.-based nonprofit whose mission is to help find a cure for amyotrophic lateral sclerosis (ALS), has issued a statement strongly opposing plans for cuts in National Institutes of Health (NIH) funding, saying any such reductions would obstruct progress in ALS research. The organization also…

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…

A photo I came across this week from when my late husband, Jeff, was living with ALS flooded me with emotions. It was taken in November 2019, the month we moved into an accessible home. His ALS was advancing rapidly at the time, which prompted our move. He could…

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…