ALS and the heavy burden of grief

ALS and the heavy burden of grief

It was six years ago last week that my late husband, Jeff, and I sat in a neurologist’s office in Maryland as the doctor said, “I believe that this is ALS.” Moments before, I’d been watching the doctor administer a second electromyography (EMG) on Jeff, who found the procedure…

Initiative to use AI technologies to improve communication in ALS

The Scott-Morgan Foundation (SMF), a nonprofit that’s pioneering assistive technology innovation, will lead a new initiative using artificial intelligence (AI) technologies to help people with diseases like amyotrophic lateral sclerosis (ALS) to better communicate and maintain their sense of identity. “We live in a world where millions are…

Texas Children’s investigator wins $2.4M grant for ALS research

A Texas Children’s Hospital investigator has received a $2.4 million grant for a study that seeks to understand whether mechanisms used by bacteria to hide from the immune system can be explored to ease inflammation in amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases. Steven Boeynaems, PhD, an investigator…

NeuroSense moving to request early approval of PrimeC in Canada

NeuroSense Therapeutics has initiated the process of applying to Canada’s regulators for early marketing approval of PrimeC in treating amyotrophic lateral sclerosis (ALS), based on positive findings in a Phase 2b clinical trial. The application will be filed under Health Canada’s Notice of Compliance with Conditions policy, which could…

Good memories sustain us when life with ALS is hard

I like the Maroon 5 song “Memories” because I’m soothed by the melody, borrowed from Johann Pachelbel’s Canon in D, and I’m moved by the lyrics. One line in particular resonates with me: “The memories bring back you.” Though my husband, Todd, is still with me,…

Highly targeted approach supports ALS gene therapy development

Researchers have developed a type of gene therapy that can rescue the function of the TDP-43 protein in diseased nerve cells in amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases while leaving healthy cells untouched. The approach uses problematic sequences called cryptic exons that are only present in cells…