In 2021, I participated in a Zoom meeting about ALS community engagement. My husband, Jeff, had passed away from the disease a year earlier, but I have remained involved in advocacy. It was during the meeting that I met a compelling young woman named Leah Stavenhagen. Then in her late…
Keros Therapeutics is collaborating with Massachusetts General Hospital to design a clinical trial evaluating its therapy candidate rinvatercept in people with amyotrophic lateral sclerosis (ALS). According to the developer, the therapy may help preserve muscle strength and function, and improve quality of life, for those with the progressive…
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The outside temperature was cold, just 15 F, but the sun was shining, so I decided to forgo my elliptical machine and instead walk down our country road. I checked on my husband, Todd, to make sure it was OK to leave, and then slid into my snow pants and…
Insmed has launched a first-in-human clinical trial evaluating its experimental gene therapy INS1202 in people with amyotrophic lateral sclerosis (ALS). The Phase 1 study, called ARMOR (NCT07290062), aims to enroll about 23 adults with ALS, ages 18 to 80, who have been living with the disease for…
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I was recently asked: “If you could reduce uncertainty in one area of your life with ALS, which would it be?” I took a few moments to think, then blurted out: “Keep my current symptoms exactly as they are. No more changes, no more surprises.” What? No wanting…
At this year’s Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, researchers and clinicians are talking about the central role of patients, families, and caregivers in driving change for people living with neuromuscular diseases. Bionews, the parent company of this site, sat down with John F. Crowley, president and…
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Becoming educated and informed about ALS is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your ALS journey.
There is no cure for ALS yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
