The ancient Greeks first introduced the term “parrhesia,” meaning “free speech,” around the end of the fifth century B.C. From a literal perspective, ALS has taught me that the concept is a misnomer. Like nearly everything else, there is…
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD),…
A single brain area previously thought to control only the movement of the hands and arms also may control movement across all four limbs, a study found. This discovery opens new avenues for the use of brain-computer interfaces in people who have lost control of their arms and legs,…
What an emotional roller-coaster time we’re in right now! During this COVID-19 pandemic, I’ve felt the upswings of coping and adapting well, followed by the downswings of worry that this crisis would never end. Only when I took a step back, to reflect on my feelings and identify what…
People with amyotrophic lateral sclerosis (ALS) are less likely to have used anti-diabetic medications in the five years preceding their diagnosis than matched individuals of the same population, a study found, supporting an inverse association between diabetes treatments and the risk of ALS. The research also points to…
Radicava (edaravone), an approved treatment for amyotrophic lateral sclerosis (ALS), can be taken for up to one year without losing its effectiveness, and benefits patients who delay its start — say, after six months of placebo in a clinical trial, a post hoc analysis of that Phase 3…
Tikomed has secured $5.5 million in financing from investors to support the ongoing clinical development of ILB, its lead therapy candidate for degenerative neurological diseases, including amyotrophic lateral sclerosis (ALS). The funding also will help develop Ibsolvmir, a therapy to increase the effectiveness of transplanting cells to treat patients…
When someone asked my husband how he is doing in light of COVID-19, Todd replied, “Our life isn’t that much different. Now everyone else is dealing with what we have been living with for years.” There are similarities between life during this pandemic and life with ALS. 1. We already…
Target ALS and The ALS Association will jointly fund two projects focused on the development of new tests to evaluate TDP-43’s potential as a biomarker of amyotrophic lateral sclerosis (ALS). Nearly all ALS cases are characterized by the formation of toxic aggregates (clumps) containing the TDP-43 protein. These…
Recently I chanced upon a re-broadcast of an entrée from the PBS series, “American Masters.” As the subject, Andrew Wyeth, was one of my late dad’s favorite artists, I enthusiastically opted in. It did not disappoint. Beyond inspiring…
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