Release the balloons and cue the marching band! May is ALS Awareness Month! Wait, what? The balloons are back-ordered? And the marching band is still sheltering in place? Well, ALS doesn’t stop, and neither should we. ALS Awareness Month is here — so let’s make it a success! My…
The ALS Association has committed $652,543 over the next three years to support efforts to improve the quality and efficiency of clinical trials for amyotrophic lateral sclerosis (ALS), and to promote the development of treatments and research partnerships. The efforts are a collaboration of the Northeast ALS Consortium (NEALS), the…
Quebec has added Radicava (edaravone),  Mitsubishi Tanabe Pharma’s treatment for amyotrophic lateral sclerosis (ALS), to its provincial medication plan. The addition means the intravenous infusion therapy is now listed on the formulary of the Regie de l’assurance maladie du Quebec, which administers public health…
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National…
With my gym closed, I’ve been getting my daily exercise by cross-country skiing. A calm happiness washes over me at about the 2-kilometer mark, after my heart rate is up and endorphins flood my brain. I take in the beauty of the woods. Soft snow, the vestige of winter,…
A branch of the European Medicines Agency (EMA) has recommended that Amylyx‘s investigational oral compound AMX0035 be designated an orphan medicine to treat people with amyotrophic lateral sclerosis (ALS). Orphan designation is given to medicines in Europe with the potential to be safe…
In 1992 the 102nd U.S. Congress declared, via joint resolution 174, that May become National ALS Awareness Month. Part of the text speaks to “finding the causes of, and the cure for, ALS will prevent the…
Reducing the excess firing of motor neurons in an animal model of amyotrophic lateral sclerosis (ALS) prevents the death of nerve cells and significantly delays the onset of motor symptoms, a recent study has found. Because the scientific approach made use of two techniques that have been studied extensively…
Because I have ALS, I need to minimize the risk of getting the coronavirus. So, I’m doing my best to follow the COVID-19 social distancing guidelines. And I appreciate the efforts of everyone who’s doing the same. Certainly wearing a mask and gloves, wiping down surfaces, and keeping…
A team at the Rowan University School of Osteopathic Medicine has received a $1.6 million grant to study the role of the SOD1 protein — whose gene is often mutated in amyotrophic lateral sclerosis (ALS) — in the communication between the gut and the brain. The National Institutes…
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