After my husband, Todd, was diagnosed with ALS, I was shattered and desperate to connect with others who might understand the pain I was feeling. I searched online for a local grief group and found one that met at a nearby church. But when I called to ask about…
Grieving the death of a life while my loved one with ALS is still alive
Target ALS has released a short documentary that follows the deeply personal journey of Dan Doctoroff, the organization’s founder and a person living with amyotrophic lateral sclerosis (ALS), as he works to change the future of ALS research. The 17-minute film, “Everyone Lives: Turning Vision Into Reality,”…
I was never a foodie. Never one to order the lobster gnocchi, a bone marrow rice bowl, or smoked mackerel wrapped in bacon. My preferences were always more pedestrian. Chicken nuggets and tater tots. Fast food hamburgers with a pile of stringy fries. Giant mall cinnamon buns as thick as…
The Robert Packard Center for ALS Research at Johns Hopkins and ALS United will fund a preclinical study investigating how TDP-43 abnormalities contribute to amyotrophic lateral sclerosis (ALS). The project, “Alternative Polyadenylation-Driven Subcellular RNA Mislocalization in TDP-43 Proteinopathies,” will explore the molecular mechanisms by which TDP-43 clumps,…
I’ve been helping my husband, Todd, ever since he was diagnosed with ALS more than 15 years ago. It started with me buttoning his dress shirts before he went to work, and then I helped him shave. Eventually, he needed my help with eating, toileting, showering, scratching itches, adjusting…
Former Texas A&M University football player Chris Larkin is returning to the university’s campus in College Station, widely known as Aggieland, to rally support in the fight against amyotrophic lateral sclerosis (ALS). Larkin, who played tight end for the Texas A&M Aggies in the 1980s, was diagnosed with…
During the first year after my ALS diagnosis, I was overwhelmed by the physical changes I was experiencing as I learned to eat, move, and speak in new ways. One of the most significant developments was the impact ALS had on my perception of time. It was as if…
The first participant has been enrolled in a large Italian clinical trial that’s testing Avextra’s cannabis-based medicine for managing symptoms in people with amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases. The NEUROBIS Phase 2 study was cleared to start about a year ago by both the Italian…
People with amyotrophic lateral sclerosis (ALS) spend upward of $47,000 on medical care during the first year after their diagnosis, more than three times the amount spent by the average Medicare user, according to a new study by the ALS Association. The study results further showed that so-called…
A new blood test that analyzes tiny fragments of DNA released by dying cells may help diagnose amyotrophic lateral sclerosis (ALS) and predict how quickly the disease will progress, a study suggested. “Our model test could not only distinguish ALS patients from healthy individuals but also from those with other…
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