A $106 million Weill Family Foundation initiative will bring together interdisciplinary researchers and clinicians at three West Coast universities in hopes of finding new treatments for brain and nervous system disorders such as amyotrophic lateral sclerosis (ALS). The University of California, Berkeley (Berkeley), the University…

After my husband Todd’s ALS diagnosis, he said, “We need to sell the house and move near your parents.” He anticipated that their day-to-day support in rural northern Michigan would be more important than being near an ALS clinic in Milwaukee, Wisconsin. We appreciated the convenience of seeing Todd’s…

When I was diagnosed with ALS in 2010, my doctor told me there was one medication available to help slow the progression of the symptoms. But there was no cure. I left her office with a prescription for Rilutek (riluzole), the first treatment…

Small molecule inhibitors that block the activity of SARM1 — an enzyme that plays a key role in nerve cell degeneration — prevent the degeneration of axons in mice and cellular models of disease, a preclinical study has found. These findings may be the first steps towards the development…

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…

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…

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…

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…

“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…

Drake University’s Occupational Therapy Doctorate program is adding a new educational resource that will bring available assistive technology used in amyotrophic lateral sclerosis(ALS) to its Caregiver Learning Labs for patients and their families. The new Assistive Technology Kit, which will be used in the labs to improve…