Transcript of Interview with ALS Association’s Calaneet Balas on Radicava, the FDA, Insurance and Pricing

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,…

Measuring neurofilaments in brain and spinal fluid appears to be a reliable way of confirming an ALS diagnosis, Belgian and German researchers report. This finding is important because it takes an average of a year from the appearance of the first symptoms before doctors can diagnose the disease. The discovery could…

https://vimeo.com/216244227 This film by Dan Habib is all about the extraordinary life of high school principal Gene Connolly. Connolly was the much-loved principal of Concord High School for 14 years before he was struck by amyotrophic lateral sclerosis (ALS) in 2014. MORE: Explaining the progression…

The Israel Innovation Authority (IIA) has awarded BrainStorm Cell Therapeutics a $2.1 million grant to support the development of NurOwn, an innovative mesenchymal stem cell-based platform to treat neurodegenerative diseases including amyotrophic lateral sclerosis (ALS).