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…

Next week, researchers, clinicians, industry leaders, and families will gather at the 2026 MDA Clinical & Scientific Conference, hosted by the Muscular Dystrophy Association (MDA), to discuss the latest advances in neuromuscular disease research and care. Ahead of the event, Bionews, the parent company of this site, sat…

I have to confess: I envy people who multitask. It is something I used to do with ease, but ALS has firmly put those days in the rearview mirror. It’s not even that I am “tasking” much these days; I find myself simply reminiscing about the times when I…

The Muscular Dystrophy Association (MDA) has launched its annual MDA Shamrocks campaign, described as the nation’s largest St. Patrick’s Day-themed fundraiser, to support people living with amyotrophic lateral sclerosis (ALS) and other rare neuromuscular diseases. During the campaign, held throughout February and March, thousands of retailers across the…

My husband, Todd, finally got in his new wheelchair! After it was delivered in September, I wrote that we needed to have the attendant control reprogrammed. That finally happened, and we’ve been fine-tuning the chair over the past week. Although both are the same brand, there are differences between…

As I cuddle my newborn granddaughter in my arms at the hospital, I murmur to her, telling her that she is perfect and I love her. I tell her about her aunts, uncles, and cousins who are excited to meet her. Despite the impact of bulbar-onset ALS on my…

Origami Therapeutics is collaborating with Ipsen to develop experimental therapies designed to remove or correct abnormal proteins that build up in neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS). The partnership will focus on small molecules known as protein degraders and correctors. These compounds are designed to…

Three years after my husband Todd’s ALS diagnosis, a friend put me in touch with another family who had been dealing with the disease for about a year. I listened as the adult daughter told me how her mom, who had ALS, couldn’t move at all, and how her…

“My body looks the same, but it works differently now.” A friend told me that 30 years ago, following her abdominal surgery. I remember nodding to show compassion, while secretly thinking, “I haven’t a clue what she’s talking about.” Decades later, living with ALS, I finally understand. When I…

Three years after my husband, Todd, was diagnosed with ALS, I was learning how to live with the ongoing ache of grief. I found myself crying as I watched our then 7-year-old daughter, Sara, ice skate in her program’s spring show. She and the other girls were wearing sparkly…