Last weekend, my husband, Todd, and I watched the movie “The Electrical Life of Louis Wain,” about an eccentric artist in Victorian England. Wain’s comical and endearing illustrations of cats changed people’s perceptions of them and led to them being more accepted as household pets. From the description,…
Our Date Night Movie Hit Too Close to Home
NeuroSense Therapeutics has received the go-ahead to begin enrolling patients in the U.S. and Italy for a Phase 2b clinical trial testing PrimeC, the company’s experimental therapy for amyotrophic lateral sclerosis (ALS). The clinical trial, called PARADIGM (NCT05357950), enrolled its first participant in June. The study is…
A Phase 1/2 clinical trial is investigating the long-term safety and tolerability of BIIB105, Biogen‘s investigational treatment targeting the ataxin-2 protein, in people with amyotrophic lateral sclerosis (ALS). Called ALSpire (NCT04494256), the trial is currently recruiting adults with ALS at 12 sites in the U.S., Canada, and…
For most people, the holidays are a time of joy and good cheer, and an opportunity to get together with family and friends. But when living with ALS, social gatherings have the potential to add stress to an otherwise happy season. For anyone like me who has ALS-related…
ET-101, Eikonoklastes Therapeutics’ experimental gene therapy for amyotrophic lateral sclerosis (ALS), has been designated an orphan drug by the U.S. Food and Drug Administration (FDA). Orphan drug status is given to investigational therapies with the potential to significantly benefit people with life-threatening or chronically debilitating diseases that affect…
The Lifestyle Healing Institute (LHI), which uses a complementary and alternative medicine approach to care, is touting the success of an amyotrophic lateral sclerosis (ALS) patient whose mobility and quality of life are said to have improved following treatment. The case of Tod, a 60-year-old patient, demonstrates that…
My late husband, Jeff, had a motorized scooter that gave us the freedom to move and travel as his ALS progressed during the summer of 2019, our first full summer living with the condition. The scooter was one of the first things Jeff ordered from Amazon as his…
“Find the victory in this.” For nearly three decades, I’ve carried these five provocative words in my mind. Like my life, their meaning to me has evolved over time. I first heard them spoken at the funeral of a young woman, and the comment was directed to her 15-year-old son,…
The U.S. Food and Drug Administration (FDA) notified Brainstorm Cell Therapeutics that it will not accept for review a company application asking that its cell-based therapy NurOwn be approved as a treatment for amyotrophic lateral sclerosis (ALS). The FDA decision, in the form of a refusal to file…
I sometimes dream my husband, Todd, is calling for me at night. I wake and check the time. If it’s after 5 a.m., I know his nighttime caregiver has left, so I check on him to see if he needs to be turned, have a limb adjusted, or an itch…
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