Following her husband’s frustration at not being able to do up the buttons on his formal work shirts, Maura Horton came up with a simple and practical solution: magnetic buttons. MORE: Seven facts about amyotrophic lateral sclerosis you might find interesting According to a report on Fox News, Horton’s husband Don…
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…
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…
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…
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…
Last week, I had the opportunity to attend a fun, social, gala event. Even though the occasion was filled with presentations and entertaining activities, my best take-home memory came from the special moment I shared with another attendee. It happened during a short lull in the program. Presentations…
Amyotrophic lateral sclerosis (ALS) is commonly referred to as Lou Gehrig’s disease. But who was Lou Gehrig? Henry Louis Gehrig was born in New York on June 19, 1903, at a time when very few people were aware of ALS, the progressive and neurodegenerative disease. Gehrig grew up to…
Part two of a series. Read part one here. To help you get started with creating your perfect treatment plan for depression, I will share my experience with two types of therapy that have been especially helpful as I learn to cope with living with ALS. I…
David Curtis Glebe, a retired 64-year-old public prosecutor now living in Millsboro, Delaware, knows he’s lucky to be alive. In mid-2013, while in Arizona, Glebe was diagnosed with pancreatic neuroendocrine cancer (PNET) — the same disease that killed Apple’s founder and CEO Steve Jobs. After three years of progress…
Researchers in Germany studying standards of care in amyotrophic lateral sclerosis (ALS) patients found a high unmet need for assistive technology devices. The cohort study, “Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach,” was published in the journal Amyotrophic Lateral Sclerosis and…
