When Juan heard, "you have ALS," his world went spinning. He learned how the right support could help him face his new challenges. Hear how his family and the ALS community rallied around Juan when he needed it most.
Note: This story was updated Sept. 30, 2022, to correct the spelling of Albrioza and clarify the FDA advisory committee voted in March that the evidence from CENTAUR was not sufficient to support Relyvrio’s efficacy in ALS. It also added Relyvrio’s list price is set at about $158,000 per year.
ALS is notoriously relentless on the human body. But it can be equally brutal on our emotions, and for my late husband and me, this was especially true when he was diagnosed. When people ask about the process of Jeff’s ALS diagnosis, I usually recount the chronological story…
After college, I worked at an after-school youth program. I loved my work, and I made ends meet on my modest salary. I met and married my husband, Todd, who had a good job, so when we started a family, I decided to stay home with our children. I…
There is no compelling evidence to suggest any medication increases the risk of developing amyotrophic lateral sclerosis (ALS), according to a review of published studies. If anything, classes of drugs including anti-hypertensives, cholesterol-lowering statins, aspirin, and oral contraceptives may be associated with a lower risk of ALS, although several…
Cellenkos will soon launch two Phase 1 clinical trials to investigate the safety and potential efficacy of its regulatory T-cell-based — Treg cell — therapy CK0803 for amyotrophic lateral sclerosis (ALS). The biotech’s announcement follows the approval, by the U.S. Food and Drug Administration (FDA), of its investigational…
You might assume from reading my column over the past few years that I’m the model of positivity. I certainly try to be, but sometimes I’m not. Like many who live with ALS, I also have moments of frustration that open the door to me saying the…
Early treatment with CNM-Au8 continues to demonstrate survival benefits in people with amyotrophic lateral sclerosis (ALS) compared with those who started treatment nine months later, according to an update from its developer, Clene Nanomedicine. The updated results come from the RESCUE-ALS Phase 2 trial (NCT04098406) and its open-label…
The U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH) have forged a partnership that seeks to advance both the understanding of rare neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS) and the development of potential treatments. The public-private collaboration, called the Critical Path…
Often, as we discuss the ravages of disease, we give short shrift to one of the most vital aspects of debilitating illnesses like ALS. We offer our sympathy, prayers, money, remedies, and sentiments, which are all very positive and appreciated. What’s missing, though? A little imagination and a broader…
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