WASHINGTON — Visitors to the ALS Association’s Washington, D.C., headquarters can’t help but notice the silver baseball bat sitting in a glass display case at the entrance. An inscription says the Louisville Slugger was presented in 1989 to Rodney L. Houts, the nonprofit group’s first president and CEO, to…
Anthony Senerchia Jr., the 46-year-old man who served as the inspiration for the ALS Ice Bucket Challenge, died on Nov. 25. He lived with amyotrophic lateral sclerosis (ALS) for 14 years. Senerchia was diagnosed with ALS shorty after marrying his high school sweetheart, Jeanette Hane, in 2003. In…
One of the most frustrating symptoms of living with a chronic illness is brain fog. There are medications to treat many symptoms of chronic diseases, but sadly there isn’t yet a pill that takes away brain fog. However, there are ways to deal with it so patients can minimize its effects and…
Last week I spent a few hours visiting with my medical team at the ALS Clinic. Usually I leave feeling a bit tired from all the testing and chatter, but I always leave satisfied I’ve learned something new and helpful. You’d think that since I’ve been…
Analyzing muscles via magnetic resonance imaging (MRI) can help detect small physiological changes that happen when motor neuron diseases like amyotrophic lateral sclerosis (ALS) get worse, concludes a study by British researchers. The study, “Imaging muscle as a potential biomarker of denervation in motor neuron disease” appeared…
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 began having difficulties staying upright on his surfboard and regularly suffered from cramping in his ankles and calves. A few months later,…
A blood test can be used to diagnose ALS and other neurodegenerative diseases, a study indicates. The biomarker development company DiamiR came up with the test, which measures levels of small RNA molecules in blood. It is much less invasive than other ways of diagnosing the diseases, according to researchers…
Expressing “profound disappointment” with tirasemtiv — their lead candidate for amyotrophic lateral sclerosis (ALS) — officials at Cytokinetics have ended development of the once-promising therapy. Robert I. Blum, president and chief executive officer of the San Francisco-based biotech, announced negative results for VITALITY-ALS (NCT02496767)…
For most people, the holidays are a time of joy and good cheer. But when living with ALS, or providing care for someone who does, holiday activities have the potential to add stress to an otherwise happy season. Over the years, I’ve come to rely on a…
The National Organization for Rare Disorders (NORD) says it’s “disappointed and dismayed” after the House of Representatives voted 227-205 last week to repeal the Orphan Drug Tax Credit as part of a U.S. tax reform package. A similar package before the Senate Finance Committee does not repeal the credit…
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