With ALS, Self-care Is Vital for Well-being

As a newly diagnosed ALS patient attending an ALS clinic, I received a packet filled with various brochures and helpful information. Attached to one pamphlet I found a small card with the words, “Taking care of myself is not an act of indulgence, it is an act…

Amyotrophic lateral sclerosis, also know as ALS or Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. There are two different types of ALS: sporadic and familial. To help you understand more about this disease, we’ve put together a list with…

Some immune cells in the brain can protect it from the damaging effects of faulty TDP-43 protein, preventing the progression of amyotrophic lateral sclerosis in mice, University of Pennsylvania researchers report. The findings challenged a long-held assumption that the immune cells play a role in damaging nerve cells, the team…

In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and report on three relevant conferences in the U.S. dealing with policies and programs of importance to patients and their families. The three are among 50 events in 32 states…

Researchers at the NYU School of Medicine described a new strategy to preserve muscle function in a mouse model of amyotrophic lateral sclerosis (ALS). The finding could have implications for the treatment of alterations that occur in the early phases of ALS, also known as Lou Gehrig’s disease. The…

This WKBW TV video is about Marcia from North Tonawanda. Marcia was diagnosed with amyotrophic lateral sclerosis (ALS) two years ago. MORE: Seven hundred sites enrolled in new infusion center directory for ALS patients prescribed Radicava Marcia’s family held a “Music for Marcia” fundraising event featuring local musicians…

ALS patients who took Rilutek (riluzole) for at least three-fourths of the time they had their disease survived longer than those who took it less, an Italian study reports. Rilutek is the first ALS treatment to obtain U.S. Food and Drug Administration approval. Scientists are still not sure how it…

Speech-language pathologists (SLPs) or speech-language therapists (SLTs) do much more than help people with speech problems such as stuttering or mispronouncing words. For children and adults with neuromuscular disorders like spinal muscular atrophy (SMA), muscular dystrophy (MD) and amyotrophic lateral…

Researchers homed in on how a particular protein, called semaphorin 3A (Sema3A), affects the survival of motor neurons in both the brain and spinal cord in models of amyotrophic lateral sclerosis (ALS). Their study, “ALS-related human cortical and motor neurons survival is differentially affected by Sema3A,” appeared in the…

What do we have in common with an astronaut who is trying to survive while stranded on a hostile planet? Answer: We share the ability to tap into our resourcefulness, resiliency, and optimism. Perhaps you had a different answer to my question, especially if you have ALS or…