My late husband, Jeff, made a dream come true for me. When I was a kid, my dad would take our family on our small powerboat to explore the waters near my hometown of Annapolis, Maryland. If we had enough time and the weather cooperated, we’d take a…
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One evening last week after I’d finished cooking dinner, I grew concerned. My almost 14-year-old son had gone out to ride his dirt bike on an off-road vehicle (ORV) trail that ran next to our property. He’d planned to go only to a nature area a couple miles away and…
BL-001, an investigational gut-targeted therapy being developed for people with amyotrophic lateral sclerosis (ALS) and Dravet syndrome, was found to be safe and well tolerated among healthy volunteers in a Phase 1 clinical trial. Findings overall indicate that Bloom Science‘s BL-001 can be given safely to humans at…
AstroRx is an investigational cell-based therapy that is being tested in early clinical trials for amyotrophic lateral sclerosis (ALS). It aims to slow ALS progression by preventing further damage to nerve cells.
Elevated blood levels of the Cystatin C protein are significantly associated with faster disease progression and shorter survival in people with amyotrophic lateral sclerosis (ALS), according to a study in China. The protein may serve as a biomarker to predict disease outcomes in people with ALS and identify those…
Last week, I sat in the dentist’s chair filled with gratitude. I know. It’s bonkers. But I couldn’t help myself. I’m grateful knowing that if I have to live with ALS, it’s happening at a time when advances in technology and accommodations help me deal with its many challenges.
Early treatment with Radicava (edaravone), an approved therapy for amyotrophic lateral sclerosis (ALS), significantly reduced the risk of hospitalization, need for ventilatory support, or death compared with delaying treatment for six months. That’s according to analyses of data from Study 19 (NCT01492686), the Phase 3 clinical trial…
ALS patients have many wants and needs to make life a little easier and more comfortable. We know we can’t get everything, but it doesn’t hurt to try. So here it goes. Our bodies were made to move; to be active rather than passive. Lack of movement leads to…
An earlier start to noninvasive ventilation (NIV) could help to improve respiratory function and prolong survival for people with amyotrophic lateral sclerosis (ALS), according to a small clinical trial in Spain. While many of the study’s findings failed to reach statistical significance, the researchers believe the data still support…
A couple weeks ago, a friend asked me, “What are you going to do for your birthday?” “We’ll just have a family dinner and play games,” I said. “That’s all I want.” When my husband, Todd, and I were married, we might have gone on a weekend getaway or out…