The European Commission has approved Qalsody (tofersen) as a treatment for amyotrophic lateral sclerosis (ALS) associated with mutations in the SOD1 gene, known as SOD1-ALS. Qalsody was specifically granted marketing authorization under exceptional circumstances — a pathway recommended when the benefit-to-risk assessment for a therapy is favorable, but…
As ALS Awareness Month comes to a close, it’s a good time to reflect on what we’ve accomplished, and perhaps more importantly, to find ways to both sustain and build upon our momentum as we search and fight for cures. For the past month, members of the ALS…
“Why are you bouncing?” my daughter asked me the other day as I prepared the medications and supplements that I give my husband, who has ALS, through his feeding tube. “It’s good for mental health,” I said. I’m always on the lookout for strategies to cope with the…
The Foundation for the National Institutes of Health (FNIH) is launching a public-private partnership to generate the largest openly available data platform in amyotrophic lateral sclerosis (ALS) research, with the goal of accelerating the diagnosis and treatment of the progressive neurodegenerative disease. This five-year initiative will be conducted through…
The Les Turner ALS Foundation, in an effort to boost and diversify clinical trial participation, has written a step-by-step guide to inform people on why clinical research in amyotrophic lateral sclerosis (ALS) needs a diverse pool of participants, how to join clinical research, and what to expect when…
From the moment I wake up to when I finish breakfast, I do things in the same order as I’ve been doing them for the past 10 years. That’s because my secret dream is to be calm, relaxed, and easygoing each day. But the steady flood of life’s curveballs,…
The fourth annual Major League Baseball (MLB) Lou Gehrig Day takes place on June 2, a date set aside to pay tribute to the legendary New York Yankees first baseman whose career was halted by amyotrophic lateral sclerosis (ALS). The Muscular Dystrophy Association (MDA) will again play…
A new documentary about I AM ALS and the “revolutionary movement” begun by the organization’s founders — which will stream globally on May 28 — is seeking to advance awareness of amyotrophic lateral sclerosis (ALS) and other neurodegenerative disorders while inspiring others to fight for change. Called “For…
As I read my daily emails and text messages, I think of my condition and what ALS Awareness Month means to me. How does it make me feel? What can I do to enhance the effects of this special month? Like the Ice Bucket Challenge, what is its…
Nature calms me and nourishes my soul amid the challenges of giving care to my husband, Todd, who has ALS. A few days ago, I walked down our country road, listening to singing birds and taking in spring’s beauty. I admired signs of new life — budding green leaves…
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