Committing to be out of the house is tricky because my husband, Todd, has ALS, making him paralyzed below the neck and requiring noninvasive ventilation. As long as his breathing is going well, I can run errands and attend events that aren’t more than 15 minutes away. Longer…
Making a commitment conditional is often necessary as a caregiver
EverythingALS has launched a new version of its mobile app that now includes community support, artificial intelligence-powered chat assistance, and enhanced research opportunities to better serve people with amyotrophic lateral sclerosis (ALS) and their caregivers. The app, which was previously designed only for people taking part in observational…
My Treatment Journey From Mexico to the US
When Francisco was diagnosed with ALS he knew it would be an uphill battle, but what he didn't know was the journey it would take him on. Discover how Francisco found the courage to move forward in the face of ALS.
It takes courage to reach out to a complete stranger and ask for their help. I know, because I’m that stranger, and the ones seeking my help are people newly diagnosed with ALS. But the good thing is, we’re not strangers for long. That’s because I try to make…
Monepantel, a veterinary drug that PharmAust is repurposing for amyotrophic lateral sclerosis (ALS), continues to slow disease progression and extend survival when taken daily for up to nearly two years, while being generally well tolerated by patients. That’s according to interim results from an open-label extension…
Two U.S. representatives have introduced legislation that would establish a federally funded research program to study the link between environmental factors and amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases. The Harmonizing Environmental Analyses and Launching Therapeutic Hubs to Yield Bolstered Research and Innovation in Neurological Science (Healthy…
My daughter, Sara, is beginning her freshman year at a university a couple hours from us, and last Saturday was her day to move into the dorms. I had planned to help her move, so weeks ago I lined up a daytime caregiver for my husband, Todd, who has…
Targeting two particular proteins, called H1.2 and PARP1, may lessen the severity of amyotrophic lateral sclerosis (ALS) linked to mutations in the FUS gene, a study shows. Researchers found that a severe FUS mutation increased the interaction of the resulting FUS protein with both H1.2 and PARP1, which is involved in…
Dewpoint Therapeutics has won a second grant from Target ALS Foundation to advance preclinical studies of its experimental TDP-43-targeted therapy for amyotrophic lateral sclerosis (ALS). TDP-43 is a protein that often gets mislocalized within cells in ALS and forms into toxic clumps that contribute to neurodegeneration. Dewpoint’s…
A consortium of amyotrophic lateral sclerosis (ALS) nonprofits and industry stakeholders has launched Project Mosaic, an initiative that aims to advance next-generation, patient-derived cell models that more accurately represent ALS’ complex and diverse nature. By moving these ALS models from academic labs to industry, Project Mosaic aims to…
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