Last week, I stepped onto my soapbox (mine has special safety handrails) and voiced my opinion about an issue that’s been bugging me for several years. It’s a problem I share with about 7.5 million other people who have trouble using their voices and cannot get voice-activated devices to…
Echo! Can You Understand Me, Now?
For the first time, a compound was able to restore the health of diseased upper motor neurons — nerve cells that carry voluntary movement signals from the brain to the spinal cord — in the brain of amyotrophic lateral sclerosis (ALS) mouse models, a study…
ALS Focus has opened a new survey looking specifically at the needs and challenges of caregiving for people with amyotrophic lateral sclerosis (ALS). Survey responses are expected to influence ALS programs and policy decisions. Register here to participate if you are an adult caregiver and live in the…
A novel system for three-dimensional (3D) imaging of zebrafish may be useful for studying the motor and neuronal deficits linked with amyotrophic lateral sclerosis (ALS), a study suggests. The system was described in the journal Optica, in the study “Coded-aperture broadband light field imaging using…
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…
I was overcome with grief after my husband, Todd, was diagnosed with ALS. He was just 39. Our daughter was 4 years old, and our son was 9 months old. I grieved the loss of our dreams of adventures that we would have — family vacations to national parks…
I AM ALS, a nonprofit working for people affected by amyotrophic lateral sclerosis (ALS), is offering a guide to help others who want to follow in its footsteps — creating a movement that mobilizes and unites a community against a disease, it announced in a press release. This free…
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Like It or Not, My Steak Is Rare
“There’s an old joke, um … two elderly women are at a Catskill mountain resort, and one of ’em says, ‘Boy, the food at this place is really terrible.’ The other one says, ‘Yeah, I know — and such small portions.’ Well, that’s essentially how I feel about…
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…
Existing safety and effectiveness data from a Phase 3 clinical trial of NurOwn — an investigational cell-based therapy for amyotrophic lateral sclerosis (ALS) — are not sufficient to support the therapy’s approval, the U.S. Food and Drug Administration (FDA) concluded in an initial review. According to the…
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