Bionews Insights is launching a survey, in collaboration with ALS News Today, with the goal of understanding how different aspects of this disease affect an individual’s quality of life. The survey, which is expected to take about 15 minutes to complete, opens with WHOQOL-100, a set of questions developed by…
New Quality of Life Survey Aims to Help Inform ALS Community Needs
A new U.S. initiative called Rare Disease Cures Accelerator–Data and Analytics Platform — dubbed RDCA–DAP — aims to accelerate treatment innovation across rare diseases by sharing existing patient data and promoting the standardization of new data collection. Launched during a virtual workshop in September, the U.S. Food and Drug…
Living with ALS has its challenges. For me, the first year after my ALS diagnosis was the hardest. Looking back, I made some mistakes and wasted time and energy that I wish I could have back again. Although we each experience a different journey with ALS, I believe we all…
Clene, and its wholly owned subsidiary Clene Nanomedicine, have launched an expanded access program (EAP) in the U.S. to allow certain people with amyotrophic lateral sclerosis (ALS) to gain access to its experimental oral therapy CNM-Au8. Called CNMAu8.EAP02, the program will focus on patients who are not eligible…
Seelos Therapeutics’ experimental therapy SLS-005 (trehalose) will serve as the fifth arm of the multi-regimen HEALEY trial for amyotrophic lateral sclerosis (ALS), after being cleared by the U.S. Food and Drug Administration and the Mass General Brigham Institutional Review Board. With this final regulatory authorization, Seelos may still…
PathMaker Neurosystems was awarded $371,000 from the National Institutes of Health (NIH) to advance its neuromodulation technology as a potential new, non-invasive treatment for amyotrophic lateral sclerosis (ALS). The Small Business Technology Transfer grant, from the NIH’s National Institute of Neurological Disorders and Stroke, will enable PathMaker to…
When our kids started school this fall, I had a sense of relief that my husband, Todd, made it to see our youngest begin middle school. He’s now at the same school campus as our 15-year-old daughter. I’m glad we’re dealing with a school transition while Todd is still with…
The ALS Association is applauding the recent change of heart by the U.S. Food and Drug Administration (FDA) to consider AMX0035’s approval for amyotrophic lateral sclerosis (ALS) without requiring results from an additional clinical trial. Earlier this year, the agency had requested data from a placebo-controlled Phase 3 trial,…
Columns
Fear Can Be a Double-edged Sword
“Fear takes control — fear of the unknown Aware of what will hurt you You’re prepared to remain this way So sad yet safe with your afflictions Afraid to start a brand new day.” Those lyrics from the song “Fear (Of the Unknown)” by British alternative band Siouxsie and…
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is finding common ground by leveraging the popularity of college gridiron games to fund research for rare diseases. Its nearly two dozen chapters — representing college football teams across the nation…
Recent Posts
- ALS Network webinar series to continue in 2026 with expert speakers
- ALS nerve damage can occur without TDP-43 protein clumps: Study
- Dealing with loss, both big and small, in life with ALS
- Scientists use fat-based ‘bubbles’ to sneak ALS treatment into the brain
- Guest Voice: ALS hasn’t stopped this go-to guy from showing up as ‘Dad’