Bionews to Cover 3 Rare Disease Day Events, Including NIH Conference

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…

In this video from LA Fitness, 51-year-old surfing fanatic Chris Mehess shares his ALS story. Chris first began experiencing problems in April 2015 when he had problems staying upright on his surfboard and regularly suffered from cramping in his ankles and calves. A few months later,…

A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…

Fat molecules appear to play a role in the development of ALS, which means that targeting them could be a way to treat the disease, French researchers concluded in a review of studies on the topic. This is particularly true of derivations of the fat molecule cholesterol known as oxysterols, which…