News

Cytokinetics awarded two amyotrophic lateral sclerosis (ALS) patient advocacy organizations grants worth $20,000, in recognition of their efforts to support their disease communities through communications, awareness, and outreach. The grants, part of the Cytokinetics’ annual Communications Fellowship Grant program, aid projects that reach underserved populations, provide assistive…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Stretchable electronics that are “intrinsically” stretchable — meaning they have tissue-like mechanical properties that integrate sensory devices with human skin — can better detect signals from a patient’s body than current, more rigid sensors, a study suggests. For now, its researchers are looking into a design for these electronics as a…

Note: This story was updated Feb. 9, 2021, to clarify details surrounding the grant Chronic Care Collaborative received from Adira.  Greg Smiley’s world changed abruptly in 2013. He was racing down a mountain road on an outback cycling trip in South Africa, when he hit an obstruction in the road…

Coya Therapeutics has raised $10 million in funding to advance the development of ALS001, a potential regulatory T-cell (Treg) therapy aiming to halt amyotrophic lateral sclerosis (ALS) progression, now in a Phase 2 study in patients. Proceeds raised in this series A funding round will also be used to…

A new project run by a consortium of European institutions aims to improve the care of people with amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS) through targeted use of artificial intelligence (AI). Called BRAINTEASER, the four-year study will monitor some 300 participants using various wearable sensors and…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

An imaging technique, called 31-phosphorus magnetic resonance spectroscopy (MRS), can be used to assess mitochondrial abnormalities in people with amyotrophic lateral sclerosis (ALS), a new study demonstrates. This non-invasive procedure could be useful for evaluating potential ALS treatments, researchers suggested. The study, “Magnetic resonance spectroscopy…

As a new U.S. Congress prepares to start the annual process of determining funding for federal programs, the ALS Association is asking its advocacy network to press their legislators to expand support for research in amyotrophic lateral sclerosis (ALS). “This year, the ALS Association will aggressively pursue new and…

Abnormalities in the activity of the protein TDP-43, whose gene is often mutated in amyotrophic lateral sclerosis (ALS), can increase DNA damage in cells, a study shows. These findings shed light on the molecular underpinnings of ALS, and may open new avenues for treatment, its researchers said. The study,…