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…
The 1987 song “Elvis Is Everywhere” by Mojo Nixon and Skid Roper asserts the omnipresence of Elvis Presley. Despite the first-glance outlandishness of the song’s premise — fittingly, the single is found on the album titled “Bo-Day-Shus!!!” — I am…
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…
I’m often asked by others in the ALS community for tips and insight from my past 10 years of living with ALS. While I am grateful for both making it this far while maintaining most of my physical abilities, I am by no means an expert. ALS symptoms differ…
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…
When I met my husband, Todd, I was a renter, so I didn’t need to worry about home maintenance. I drove a 15-year-old Oldsmobile Cutlass Ciera, and I didn’t do much vehicle maintenance beyond having the oil changed. I put gas in the tank, and I figured as long as…
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…
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