Note: This story has been updated March 6, 2025, to correct a quote from Mindy Henderson, MDA vice president of disability outreach and empowerment. The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place…

The Muscular Dystrophy Association (MDA) has rolled out its St. Patrick’s Day fundraising campaign, MDA Shamrocks — the largest such campaign in the U.S. marking this day — to raise money for research, patient care, and advocacy for amyotrophic lateral sclerosis (ALS) and other rare neuromuscular…

Four experimental treatments for amyotrophic lateral sclerosis (ALS) have been tested in the HEALEY ALS platform trial and two, CNM-Au8 and pridopidine, have shown promising results and are moving toward Phase 3 testing. The others, zilucoplan and verdiperstat, failed to show any benefit and are no…

It’s been a rough couple weeks since my husband, Todd, came down with a respiratory illness. The first weekend was the worst, with nausea, fever, chills, body aches, and chest congestion. By day four, he was able to eat a bit, and he spent longer stretches of the day…

A photo I came across this week from when my late husband, Jeff, was living with ALS flooded me with emotions. It was taken in November 2019, the month we moved into an accessible home. His ALS was advancing rapidly at the time, which prompted our move. He could…

Neuropeutics has partnered with LifeArc to advance work on a small molecule therapy against TDP-43 clumping as a potential disease-modifying treatment for amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND). Studies in cellular and animal models found the candidate treatment,…

Last week, I fully intended to write a new “Living Well With ALS” column. I sat down, flipped open my laptop, gazed out the window, and got lost in a stare. As the minutes ticked by, my computer screen finally clicked off, my mind blanked out, and I had…

I was enchanted on the first date with my late husband, Jeff, when our conversation turned to work. It’s an odd thing to say, because we can be conditioned to believe that work should be a less important aspect of our lives. But what I noticed in Jeff was a…

Do you have an ALS “inspiration folder?” I do. And I just added another name to my ever-growing list. Even though most people in my folder don’t have ALS, what inspires me is that despite their dire circumstances, they dare to have goals and find ways to…

Team Gleason has expanded its collaboration with Synchron to raise awareness about the company’s BCI Community, an initiative that’s designed to help people with disabilities and their loved ones know more about brain-computer interface (BCI) solutions and gather insights to advance their development. BCIs can detect activity in…