A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…
Patient Advocacy Groups Worldwide Plan Events to Mark Rare Disease Day, Feb. 28
Fat molecules appear to play a role in the development of ALS, which means that targeting them could be a way to treat the disease, French researchers concluded in a review of studies on the topic. This is particularly true of derivations of the fat molecule cholesterol known as oxysterols, which…
Interleukin 4 reduces the severity of clinical symptoms during the early phase of amyotrophic lateral sclerosis (ALS), but has no effect in halting the death of motor neuron cells as ALS progresses, an Italian mouse study shows. The study, “Interleukin 4 modulates microglia homeostasis and attenuates the early slowly…
Orangetheory fitness members across the United States and Canada plan to raise $2 million for Augie’s Quest to cure ALS, an organization supporting research into a cure for amyotrophic lateral sclerosis (ALS). Money raised this year will go to help advance a promising potential ALS treatment, AT-1501,…
This Facebook video from Science Nature Page shares a little bit of information about the wearable robot hand that has been designed to help people who have lost function of their hands. MORE: Six ALS therapies designed to improve quality of life The device could help people who suffer…
The United States has enacted legislation to ensure permanent funding of speech-generating devices that allow people with degenerative diseases such as ALS to communicate. Both houses of Congress unanimously approved the original version of the Steve Gleason Act that was enacted in 2015 but set to expire this year. The…
Social Clips
Filmmaker Finishes Film Project With Advanced ALS
In this video from CBS Sunday Morning, follow the journey of award-winning filmmaker Simon Fitzmaurice as he completes his pet project, a film called My Name is Emily, despite being diagnosed with amyotrophic lateral sclerosis (ALS) eight years ago. MORE: Explaining the progression…
The amount of RNA molecules present in the blood and central nervous system of amyotrophic lateral sclerosis (ALS) patients seems to play a role in the onset and development of the disease, a study published in the journal Scientific Reports showed. A better understanding of the involvement of RNA molecules…
Increasing the levels of a neurotransmitter-generating brain enzyme that is in short supply in paralysis disorders restored movement in a fly model of ALS, an Italian study shows. Bolstering the Gad1 enzyme’s levels also led to the return of a pre-disease pattern of nerve cell organization, the researchers said. The…
Last week, I had the opportunity to attend a fun, social, gala event. Even though the occasion was filled with presentations and entertaining activities, my best take-home memory came from the special moment I shared with another attendee. It happened during a short lull in the program. Presentations…
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