Even though I know my brain is in charge, there are days when my body seems to have a mind of its own. When that happens, I remind myself that my body is not the enemy. In fact, there is no enemy at all — just me, misunderstanding my…
Knowing my body isn’t my enemy helps me be at peace with ALS symptoms
People whose amyotrophic lateral sclerosis (ALS) begins with speech and swallowing problems, known as bulbar onset, are typically diagnosed about four months sooner than those whose disease begins with arm or leg weakness, known as limb onset. That’s according to a pooled analysis of data from 13 studies across…
Before my daughter, Marissa, was diagnosed with ALS in September 2022 at age 30, I was convinced that her symptoms could be attributed to anything except ALS. Denial made it hard to accept reality. Since then, my world has been turned upside down. Early in 2022, Marissa began experiencing…
Neurosense Therapeutics announced that it’s preparing a new drug submission to Health Canada — following a meeting with the regulatory agency — to seek approval of PrimeC, its combination therapy for amyotrophic lateral sclerosis (ALS), in the North American nation. During that meeting, the U.S. biotech company presented…
The U.S. House of Representatives has passed legislation that would renew the ACT for ALS, a landmark federal law that supports amyotrophic lateral sclerosis (ALS) research and helps people with the disease access promising experimental therapies. The ACT for ALS Reauthorization Act (H.R. 8205) will now move to…
A stem cell therapy conditionally approved in South Korea for treating amyotrophic lateral sclerosis (ALS) will remain available in the Asian nation despite failing to meet the main goal of a late-stage clinical trial that sought to confirm its effectiveness. Developer Corestemchemon announced that Neuronata-R (lenzumestrocel) will…
The Muscular Dystrophy Association (MDA) brought its Engage Community Seminar to Hershey, Pennsylvania, on July 18, uniting individuals with neuromuscular diseases, caregivers, and medical experts for a day of education and connection. Hosted in collaboration with the Penn State Health Milton S. Hershey Medical Center, the one-day event featured a…
Of all the scenes that stay in my mind from my late husband Jeff’s time with ALS, this is among the most enduring: Jeff, wearing a Navy baseball cap and a weathered T-shirt, sitting behind the console of a rented pontoon boat as he navigated the waters of the…
Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention…
Last week, the winds shifted, bringing plumes of smoke from wildfires in Minnesota’s Boundary Waters and Canada across Lake Superior to Michigan’s Keweenaw Peninsula. While our lives and homes are not at risk, unlike those in the areas burning, the smoke still affects daily life. It’s especially concerning for people…
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