“What you need, my son Is a holiday in Cambodia Where people dress in black.” Those lyrics from the song “Holiday in Cambodia” by the punk rock band Dead Kennedys illustrate how counterintuitive any public holiday display may appear. Without knowing the context, all-black attire may seem odd. Yet,…
Dimethyl fumarate or DMF — an oral therapy approved for multiple sclerosis (MS) — was well-tolerated among adults with amyotrophic lateral sclerosis (ALS) but failed to significantly slow disease progression or to improve survival and quality of life in these patients, according to data from a Phase 2…
A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.
I realize the words “ALS” and “humor” don’t always hang out together, but in my life they often do. I’ve been living with ALS since 2010, and over the years, I’ve learned not to let a day go by without finding humor in the absurdity of it all. Most of…
Expansion Therapeutics has raised $80 million in funding to support the development of its small molecule RNA platform, called SMiRNA, for amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases. The Series B financing will help the drug development company use its platform to discover small molecules targeting RNA…
Research into gene therapies for motor neuron diseases (MNDs), a group of progressive neurological disorders that includes amyotrophic lateral sclerosis, is set to begin at the University of Sheffield in collaboration with Cell and Gene Therapy Catapult. Supported by a £513,141 (about $700,00) grant from LifeArc and the…
Cytokinetics is accepting applications from advocacy groups working in cardiovascular and neuromuscular diseases, including amyotrophic lateral sclerosis (ALS), for grants worth $20,000 each that will help them expand their communications and community engagement. In total, five Cytokinetics Communications Fellowship Grants will be awarded winning organizations. The deadline for applications…
The ALS Association has launched a new diagnostic guide — called thinkALS — to aid neurologists in more quickly suspecting and diagnosing amyotrophic lateral sclerosis (ALS) at its early stages. Early diagnosis will allow patients to join clinical trials, and to access treatments and care at disease stages where there’s…
“Does caregiving for ALS ever get easier?” I pondered the question someone had posted on social media. I couldn’t sleep for days after my husband, Todd, was diagnosed. I was consumed with anxiety and fear for the future. How was I going to parent our children as a single mom?…
When I was in elementary school, my mom would occasionally take my brother and me to Woolworth’s, our local five-and-dime store. We would often have lunch there, and my staple was the open-faced roast beef platter, followed by a hot fudge sundae. Afterward, my brother and I were left…
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