Finding Sweetness in the Eye of the Storm

Just like Lionel Barrymore as James Temple in “Key Largo“ and Gary Sinise as Lt. Dan Taylor in “Forrest Gump,” I survived a hurricane wheelchair-bound. Unlike the original works that those two movies are derived from, my hurricane…

Accessing and understanding insurance coverage, and paying for medical treatments and services top the list of stressors that burden people with amyotrophic lateral sclerosis (ALS) in the United States, a survey of patients and caregivers reports. Ten percent of its 444 respondents — in 1 in every 10 —…

Recently, I noticed I was having problems keeping track of time. Not clock time, as in being a little early or showing up too late. But calendar time — the past weeks and months of living in lockdown have caused my days to morph together. I knew I was doing…

A new telehealth app to help people with motor neuron diseases such as amyotrophic lateral sclerosis (ALS) connect with their healthcare providers during the COVID-19 pandemic has been fast-tracked for use in the United Kingdom. The Telehealth in Motor Neurone Disease (TiM) system, developed by the  …

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

Two U.K. organizations, the Motor Neurone Disease (MND) Association and Nick Smith Foundation, are partnering on a pilot project to help youngsters affected by motor neurone disease (MND) create memories of their family member or friend. The initiative is being tested in four cities in England: Milton Keynes, Manchester,…

BrainStorm Cell Therapeutics’ cell-based therapy NurOwn increases the number of immunosuppressive cells and lessens inflammation, according to a small preclinical study. These immunoregulatory effects, along with NurOwn’s neuroprotective and neuroreparative properties, may be key to halt the progression of amyotrophic lateral sclerosis (ALS) and other neuroinflammatory diseases, including…

“That’s the one project I wish I could have finished,” my husband, Todd, said while looking out a window at Comet’s doghouse. He had expressed similar sentiment on other occasions over the last few years. After Todd was diagnosed with ALS, we sold our house in southeastern Wisconsin and built…

The nonprofit group I AM ALS has opened a global resource to help keep amyotrophic lateral sclerosis (ALS) patients and their caregivers fully aware of clinical research underway. Called ALS Signal: Clinical Research Dashboard and created by patients, caregivers, and advocates, the dashboard offers a user-friendly way to learn about…

Last week, I ended this column with a tongue-in-cheek inference that in deference to an improbable ALS curse befalling me, I would not share two near-disaster experiences anytime soon. This week, I am reneging on that prediction with the following disclaimer:…