Ever since my husband Todd’s ALS led to his paralysis, it has been hard for him to get comfortable. This is especially true now that he wears a mask nearly 24/7 for noninvasive ventilation support. For years, I’ve jumped into action when he calls me to swat a…
Improving my husband’s comfort feels like a win
Albrioza, the approved treatment for amyotrophic lateral sclerosis (ALS) formerly known as AMX0035, is one giant step closer to being eligible for reimbursement under public drug plans in Canada, according to its developer, Amylyx Pharmaceuticals. Amylyx has reached an agreement with the pan-Canadian Pharmaceutical Alliance, or pcPA —…
PEG10, an ancient, virus-like protein that supports the development of the placenta, appears to also participate in the nerve cell loss associated with amyotrophic lateral sclerosis (ALS), researchers discovered. ALS-causing mutations in the UBQLN2 gene were found to prevent the proper degradation of PEG10. This led to a…
The other day, right in the middle of doing my daily chair exercises, I had to stop and turn down the volume of my mind’s inner critic. Because I was feeling a little sluggish and off balance, the voice in my head was absolutely convinced that my ALS symptoms…
The first text message my late husband, Jeff, ever sent me was just one word. We’d had our first date the previous evening, and our dinner at a sidewalk restaurant on a mild autumn evening in Alexandria, Virginia, was full of laughter. I was happy to see his text the…
BenevolentAI is advancing BEN-34712, its experimental oral therapy for amyotrophic lateral sclerosis (ALS), to late-stage preclinical studies. The studies are expected to support a future investigational new drug (IND) application, a formal request to the U.S. Food and Drug Administration (FDA) to test a potential new treatment in clinical…
About 19 years ago, my newlywed husband, Todd, bought me golf clubs. He loved the sport and thought it’d be a fun way to spend time together. I was open to the idea, even though I used to be one of those kids who dreaded gym class. I’ve never been…
QurAlis soon expects to open its ongoing Phase 1 clinical trial testing QRL-201 in people with amyotrophic lateral sclerosis (ALS) at sites in various European Union countries, including Germany, Belgium, the Netherlands, and Ireland. The company’s announcement comes after these countries reviewed and accepted an application for…
To better understand amyotrophic lateral sclerosis (ALS) and improve patient care, Mitsubishi Tanabe Pharma America (MTPA) is partnering with the ALS/MND Natural History Consortium in collecting real-world data on people with the progressive neurodegenerative disorder. The collaboration will give MTPA access to the consortium’s data repository,…
Last month, a series of health issues bombarded me. They flew in on top of my usual ALS symptoms, causing me to become frustrated and ask, “Has this become my new normal?” But the advice I once received from a TV game show host rescued me — advice that…
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