At face value, the purpose of the National Amyotrophic Lateral Sclerosis (ALS) Registry seems quite straightforward: collecting data on the U.S. population with ALS. But there’s a lot more to it. The registry, funded by the…
What Causes ALS? National Registry Seeks Answer
With a heightened emphasis on clinical trials, improved care, and identification of risk factors, the ALS Association has created a plan intended to make amyotrophic lateral sclerosis (ALS) “livable” by 2030. While it continues to search for an ALS cure, the nation’s largest ALS nonprofit organization believes that, within a…
If a year ago you would have told me that going without a face mask would be an emotionally challenging thing to do, I would’ve had a good chuckle. But last week, as a fully vaccinated person, I did it, and several times to boot. Although I felt confident being…
Cytokinetics has reaffirmed its partnership with The ALS Association in the fight against amyotrophic lateral sclerosis (ALS) by continuing to support events and initiatives throughout 2021. The muscle biology biopharmaceutical company also is working to advance the clinical development of its experimental therapy reldesemtiv, designed to improve…
Researchers at the University of Queensland in Australia have begun preclinical studies of macimorelin, Aeterna Zentaris’ approved oral diagnostic, as a potential treatment for amyotrophic lateral sclerosis (ALS). The preclinical development program, led by Frederik Steyn, PhD, is part of a recent agreement between university researchers and…
To further support amyotrophic lateral sclerosis (ALS) patients through research and clinical studies, the Canadian province of British Columbia is giving CA$2 million (about $1.65 million) to the ALS Society of BC to support a collaboration called Project Hope. In partnership with the University of British…
We had a health scare a couple weeks ago, and I had to take our 8-year-old goldendoodle to the vet. Earlier in the week, Comet didn’t have his usual zip. Instead of eagerly greeting visitors, he stayed on his doggy bed. By Thursday evening of that week, Comet began…
The U.K. research organization LifeArc will match £500,000 (about $704,000) of the money raised by the director of the Leeds Rhinos’ rugby club in a series of marathons he ran to support research into amyotrophic lateral sclerosis (ALS) and other motor neuron diseases. The match for this part…
“You shoot me glances and they’re so hard to read, I misconstrue what you mean. … Are you just playing, making passes? Well, my heart could use some glasses. … Do I read you correctly, I need you directly,…
Note: This story was updated Sept. 21, 2021, to note that 18% of patients, not 80%, experienced increases in the MUNIX(4) sum score at some point during the study. Participants in a placebo-controlled Phase 2 clinical trial of CNM-Au8, Clene Nanomedicine’s investigational oral therapy for amyotrophic…
Recent Posts
- After 15 years as an ALS caregiver, I’m still learning from others
- Early PrimeC use slows ALS progression, reduces complication risk
- Learning ALS self-advocacy involves being a little pushy
- Brain implant decodes finger moves so paralyzed patients can type
- Grant funds new ALS treatment approach targeting TDP-43 pathway