My week has been full of projects, online responsibilities, physical activities, minicelebrations, and, oh yes, living with ALS. And while we ALS patients often complain that having our disease is a 24/7 challenge with no days off, I’ve found a way to give myself a mental break and enjoy…
With ALS, I Take Time for Minicelebrations Every Week
Team Gleason and Synchron have entered into a partnership aiming to advance a technology that offers greater accessibility for people with amyotrophic lateral sclerosis (ALS) and other conditions that affect physical movement. Synchron is developing brain computer interfaces, or BCIs — devices that can detect activity in…
A research team has developed a new way to search for genes and gene mutations that may contribute to the development of rare diseases, bypassing some of the challenges typically associated with genetic analyses. For diseases like amyotrophic lateral sclerosis (ALS) in which genetic factors are thought to…
The U.S. Food and Drug Administration (FDA) has approved Mitsubishi Tanabe Pharma America (MTPA)’s oral suspension formulation of edaravone, Radicava ORS, for the treatment of amyotrophic lateral sclerosis (ALS). The oral therapy is designed to offer the same efficacy as MTPA’s Radicava (edaravone) — an FDA-approved, into-the-vein therapy…
In the summer of 2010, my husband, Todd, stopped at the mall after work. It was my birthday, and he hadn’t gotten me anything yet. His mind was still swirling a month after receiving an ALS diagnosis. The shock of it. The grief. He walked through the mall…
A partnership between Rolls Royce and the U.K.-based Motor Neurone Disease (MND) Association is helping people with amyotrophic lateral sclerosis (ALS) preserve the sound of their voices simply by reading a book into a computer. Called voice banking, the process is a way to record a person’s voice…
Silence ALS, a new initiative supported by Target ALS, set as its goals discovering and developing personalized antisense oligonucleotide (ASO) treatments for amyotrophic lateral sclerosis (ALS) patients with rare disease-causing mutations, while advancing understanding of the disease’s overall biology. The initiative, a collaboration between the n-Lorem Foundation, which…
Like many ALS patients who have swallowing issues, a condition known as dysphagia, I follow a regimen of what I can and cannot eat. I’ve accepted this as my new normal for a number of years now, so my emotional reaction to a friend’s recent social media post caught…
A Phase 2 clinical trial has begun dosing patients to evaluate the safety and effectiveness of Denali Therapeutics‘ investigational oral therapy SAR443820 in people with amyotrophic lateral sclerosis (ALS). The study, dubbed HIMALAYA (NCT05237284), is recruiting about 260 adults at sites in the U.S., Belgium, France, Germany,…
ProMIS Neurosciences announced plans to advance a monoclonal antibody against toxic TDP-43 protein clumps as a potential treatment for amyotrophic lateral sclerosis (ALS). The candidate antibody therapy, called PMN267, has shown promise in preclinical experiments conducted at independent institutions, the company also reported in a press release. Nearly all cases…
Recent Posts
- Rollator revamp needed because design matters for living well with ALS
- Study probes high ALS risk in elite athletes and other ‘champions’
- First ALS patient dosed in study of experimental gene therapy VTx-002
- New collaboration targets protein buildup linked to brain diseases
- New funding backs commercial readiness efforts for ALS therapy