Sometimes living with my ALS isn’t a matter of finding the right balance of effort and ease. At times, I have zero mental motivation to make the effort in the first place! And from the comments I read on many social media sites, other ALS patients have…
Finding motivation when I hit the ‘why bother’ moment
A new genetic risk score that takes hundreds of different genetic variations into account may help predict who’s most likely to develop amyotrophic lateral sclerosis (ALS). The score needs to be validated in future studies before being used in the clinic, but could be important to stratify people according…
Green Lake, in northern Michigan, is verdant and peaceful. Evergreen and aspen trees grow right to the water’s edge, and the shores are dotted with summer cottages and a smattering of small docks and boat houses. If I could conceive of the perfect lake, this would be it. My…
The French medtech company BrainTale has raised €4.5 million (about $4.9 million) to support the development of a noninvasive imaging analysis platform to help diagnose and monitor amyotrophic lateral sclerosis (ALS) and other neurological disorders. The platform, called BrainTale-care, is a digital medical platform that examines MRI scans…
My 13-year-old son and I started mountain biking a few summers ago during the pandemic. He quickly became a much more aggressive biker than me, tackling jumps and getting air while I try to keep my tires on the ground. He easily outpaces me, often waiting at trail…
Work into developing molecules that block microRNA-155 (miR-155) as potential treatments for amyotrophic lateral sclerosis (ALS) has advanced to the stage of testing candidate molecules in animal models of the disease. Initiated last year, the miR-155 project is a collaboration between scientists at Regulus Therapeutics and Brigham…
A Phase 3 clinical trial that’s testing FNP122, Ferrer’s oral formulation of edaravone, in people with amyotrophic lateral sclerosis (ALS) is now rolling participants into its open-label extension study. The ADORE trial (NCT05178810) is testing FNP122 against a placebo in about 300 patients across Europe whose…
VRG50635, an experimental oral therapy being developed by Verge Genomics for amyotrophic lateral sclerosis (ALS), was found to be safe and well-tolerated in healthy volunteers, new Phase 1 trial data show. Top-line data from the trial (ISRCTN14792372) also showed a promising tolerability and pharmacological profile supporting once-daily…
The Committee for Medicinal Products for Human Use (CHMP) has issued an opinion opposing Amylyx Pharmaceuticals’ bid for conditional European Union approval of AMX0035, its oral treatment to slow the progression of amyotrophic lateral sclerosis (ALS). The negative recommendation from the advisory committee, an arm of the…
As I consider the progress we’ve made on ALS, I can’t help wondering if our overall awareness will continue to grow and lead us to even more sensitivity and advocacy. What real action will take place? Will initiatives be developed and sustained? Will we patients be closer to…
Recent Posts
- New funding backs commercial readiness efforts for ALS therapy
- US lawmakers reintroduce bill to improve access to treatment for ALS
- An emotional dance performance mirrored my life with ALS
- Expanded access program for ALS drug MN-166 at 50% enrollment
- US clinical trials lack diverse representation of ALS patients