Rare Disease Film Festival Highlights Patient and Researcher Unity

Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. Disorder: The Rare Disease Film Festival strives to eventually host a film about every one of the nearly 7,000 rare…

In Mark Twain’s book, “A Connecticut Yankee in King Arthur’s Court,” the protagonist, Hank Morgan, is ridiculed during a roundtable assemblage for his strange appearance and dress. He is subsequently sentenced to burn at the stake.  Except for…

The non-invasive delivery of ultrasound waves in a controlled, targeted manner can be safely used to open the blood-brain barrier in people with amyotrophic lateral sclerosis (ALS), giving temporary access to their motor cortex, results from a first-in-human trial show. The approach — called magnetic resonance guided…

I’m always pleased to read news of advancements in health and wellness for those of us living with ALS. But one statement always makes me laugh out loud: ALS patients shouldn’t exercise because they need to save their energy. More than 10 years of published research on exercise and…

Aural Analytics and the Translational Genomics Research Institute (TGen) will collaborate on a new acupuncture clinical trial to assess how the treatment affects speech in people recently diagnosed with amyotrophic lateral sclerosis (ALS). TGen, a nonprofit medical research institute, will sponsor…

Radicava (edaravone), an intravenous treatment for amyotrophic lateral sclerosis (ALS), is now commercially available in Canada, Mitsubishi Tanabe Pharma Canada (MTP-CA) has announced. The treatment was approved in Canada in October 2018, and has since been under the regulatory process that determines how, where, and at what…

The ALS Association has awarded the nonprofit ALS Never Surrender Foundation a $300,000 grant to bring its precision point mobile technology app to patient progression research trials nationwide. Called ALS iNVOLVE/eNGAGE, the application enables the remote tracking of vitals including muscle control, dexterity, speech, breathing and…

Sometimes I’ll pick up a magazine in a grocery store checkout line and see a marriage article about sex or the division of household chores. I’ll sigh wistfully. Healthy people problems. In “Flying Without Wings,” Arnold Beisser describes his journey to become a psychiatrist, which was nearly impossible after…

Exercise appears to benefit people with amyotrophic lateral sclerosis (ALS) by normalizing molecular changes that occur at the junction of nerves and muscles, but by degrees that depend on the type of exercise, a study in a mouse model of ALS suggests. While running and swimming both lessened the profound molecular…

“I think of a hero as someone who understands the degree of responsibility that comes with his freedom.” —Bob Dylan Recently, I had the pleasure of participating in the annual Southwest Florida Muscular Dystrophy Association fundraising gala, “Toast…