Sometimes I find perspective when I listen to other rare disease communities. ALS News Today is just one publication of its parent company, Bionews, which hosts more than 50 online websites devoted to rare and chronic diseases. Last week, I got on Cystic Fibrosis News Today to catch up…
Researchers at Northwestern University received a $7.3 million research grant from the National Institute on Aging to expand their work on NU-9, which has shown promise in amyotrophic lateral sclerosis (ALS) preclinical studies, and explore its effectiveness in other neurodegenerative diseases. The institute is a division of the National…
Sometimes people reach out to me or my husband, Todd, to get our advice on building an accessible home. We share with them what we’ve learned over the past 14 years with his ALS and progressive disability. After Todd was diagnosed, we realized that we’d need to sell…
Woolsey Pharmaceuticals has received three new U.S. patents covering innovations related to Bravyl (oral fasudil), its investigational amyotrophic lateral sclerosis (ALS) medication. The patents cover the use of oral fasudil to slow the progression of sporadic ALS, as well as solid and liquid formulations of fasudil for people…
A few weeks after my late husband, Jeff, was diagnosed with ALS in 2018, we were sitting in our primary care doctor’s office to talk. We’d just received a second opinion confirming the diagnosis, and we were reeling. I remember how brutal the appointment felt for all three of us.
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 related neuromuscular conditions.
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…
Avextra is set to launch a Phase 2 trial in Italy to test a cannabis-based oral medication for the management of symptoms in people with amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases. The announcement comes after clearance from both the Italian Medicines Agency and the Ministry of…
A man with amyotrophic lateral sclerosis (ALS) recently became the first person to control an Amazon Alexa device with his thoughts, via an investigational, implanted brain-computer interface (BCI) from Synchron. The 64-year-old man, identified in a Synchron press release as Mark, lost the function of his upper…
Quralis has completed dosing in the first group of healthy adults who volunteered for its Phase 1 clinical trial of QRL-101, an experimental oral small molecule being developed for amyotrophic lateral sclerosis (ALS). QRL-101-03 (NCT06532396) is expected to enroll about 60 volunteers who’ll be divided into five…
