https://www.youtube.com/watch?v=FvC5KheFWG8 This video from Patients Like Me is all about Cris, who is a mother, grandmother, and great-grandmother. Cris also has amyotrophic lateral sclerosis (ALS). She was diagnosed two years ago but hasn’t had the time to sit around and get depressed about her diagnosis. In between spending time with…
Researchers have slowed the progression of an ALS-like disease in mice, and prolonged their lives, by reducing the activity of a protein receptor that helps transmit signals between nerve cells. The study, which involved the metabotropic glutamate receptor 5, or mGluR5, was published in the journal Neuropharmacology. The article was titled “…
Radicava (edaravone), the first approved treatment for amyotrophic lateral sclerosis in 22 years, is being welcomed with “a great deal of excitement” in the ALS community, an ALS Association executive said. The excitement stems both from Radicava’s potential to treat the disease and the hope that its approval will lead…
Below is a transcript of the ALS News Today interview with Calaneet Balas, executive vice president of strategy for the ALS Association. The nonprofit association, established in 1985, is active in promoting research into ALS, providing assistance to patients through its network of 39 state chapters, and in coordinating care though its…
Edaravone — now more widely known by its U.S. brand name, Radicava — has produced “a minor miracle” for some amyotrophic lateral sclerosis patients, said Stephen Byer, co-director of ALS Worldwide. “We have found and continue to find great benefit in terms of slowing, stopping and, in some…
If you are active on social media and have a chronic illness, you’ve probably come across the term “spoonie.” The word comes from a woman’s explanation of how she has to manage her energy levels each day.  As she was in a cafe at the time, she grabbed a bunch of spoons to…
While living with a chronic illness can be challenging, there are ways that you can make life easier and live a happy and fulfilling life. Establishing good habits and routines takes time, but as Gunnar Esiason points out in his blog Own It, there are some “common sense approaches” to…
University of Michigan and University of Pennsylvania researchers used a cutting-edge technique called cryo-electron microscopy to see how the Hsp104 yeast enzyme breaks up clumps of the misfolded proteins that are hallmarks of neurodegenerative diseases like ALS. The resolution that the technique provided was so high that it was close to the level…
In my last column, I shared how I’m always on alert for speed bumps as I travel down life’s highway, while living with ALS. These are the metaphorical unknowns that pop up, and challenge my resilience and positive mindset. But in addition to speed bumps, it’s the mental potholes that…
Harvard Medical School researchers have discovered how a mutation of the C9ORF72 gene causes the changes in energy production and nerve cell function that are linked to inherited forms of ALS and frontotemporal dementia, or FTD. The mutation produces two toxic proteins that can disrupt the normal processing of genetic instructions,…
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