Our family had another close call recently that caused us to our reexamine our methods of emergency communication. Due to ALS, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is dependent on noninvasive ventilation to breathe and to talk. Without…
A scary incident made us rethink emergency communication methods
Coave Therapeutics has received a grant from the ALS Association to support the development of its gene therapy candidate CTx-TFEB for amyotrophic lateral sclerosis (ALS). The grant, made through the Lawrence and Isabel Barnett Drug Development Program, is part of the $2.9 million the ALS Association…
Daily treatment with monepantel — a drug widely used in veterinary medicine — was shown to reduce the rate of disease progression by as much as 58% in people with amyotrophic lateral sclerosis (ALS) or motor neuron disease (MND), according to top-line data from a Phase 1 trial.
I have an imaginary toolkit filled with a variety of stress-reduction strategies to help me when life’s speed bumps appear. Living with ALS is stressful enough, but add in TV news, social media, and other minor dramas and I can quickly feel overwhelmed. In addition, I was bored…
Blocking a protein called PTP sigma led to better nerve survival and motor function in a mouse model of amyotrophic lateral sclerosis (ALS) caused by mutations in the C9ORF72 gene — leading the researchers to highlight this strategy for potentially treating this genetic ALS form. Data from cell models…
Relyvrio (sodium phenylbutyrate and taurursodiol), an approved treatment for people with amyotrophic lateral sclerosis (ALS), has failed to meet its primary goal of slowing disease progression in an ongoing Phase 3 clinical trial designed to confirm its effectiveness. That’s according to new data from the trial, dubbed PHOENIX,…
A couple of weeks ago, I lined up a daytime caregiver for my husband, Todd, so I could take a day trip with our 14-year-old son to ski and snowboard. During the two-hour car ride, he introduced me to the “Bellied Up” podcast, a call-in advice show with comedians…
New data show that blood-based measures, including levels of markers of nerve damage and chemical DNA modifications, can help predict which individuals with amyotrophic lateral sclerosis (ALS) will have faster disease progression over time. However, because the disease course may be altered with Radicava or Radicava ORS —…
Note: This story was updated March 6, 2024, to correct the poster was presented by Brainstorm’s executive vice president and chief development officer Bob Dagher. A pivotal, Phase 3b clinical trial is planned to test the cell-based therapy NurOwn (debamestrocel) in people with amyotrophic lateral sclerosis (ALS),…
While the most recent guidelines for treating amyotrophic lateral sclerosis (ALS) recommend that patients receive three available treatments together, as soon as possible, a new analysis of U.S. data shows that most individuals with the progressive disease don’t get this combination in clinical practice. The analysis found that most…
Recent Posts
- How ALS patients can show their stripes for Rare Disease Month
- Grants support next generation of ALS researchers in Canada
- ALS research wins big bucks with $313M in new US government funding
- Guest Voice: I’m leaving behind a legacy of love through letters
- ALS report cards show how US states fall short on patient support