The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
Innovate UK has given a grant to Reflection Therapeutics to help fund research into new ways of protecting the nervous system from motor neuron diseases, with amyotrophic lateral sclerosis (ALS) as an initial focus. The Innovate Smart Grant, which is reported to be…
Researchers report having created a new human-on-a-chip model, one able to more accurately simulate the clinical features of amyotrophic lateral sclerosis (ALS) in people. The chip uses motor neurons — the nerve cells responsible for controlling voluntary muscles — derived from stem cells isolated from ALS patients. This approach…
Years before my husband was diagnosed with ALS, I coordinated a tutoring program in Milwaukee. Many of the children and teens I worked with lived with stress and instability in their homes and neighborhoods. For some kids, just consistently showing up to school and the tutoring program was an accomplishment…
The greater incidence of amyotrophic lateral sclerosis (ALS) among professional athletes and people with head trauma, and the faster functional decline seen in animal models after localized nerve injury, strongly suggests that nerve injury plays a role in initiating disease processes, a review study reported. Needed avenues of future…
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Is It a Jinx or a Sphinx?
“You don’t tug on Superman’s cape, You don’t spit into the wind, You don’t pull the mask off the old Lone Ranger, And you don’t mess around with Jim.” Based on recent events, I might add…
Seelos Therapeutics has received a notification from the U.S. Food and Drug Administration (FDA) permitting the launch of its Phase 2b/3 clinical trial investigating SLS-005 (trehalose) as a treatment for amyotrophic lateral sclerosis (ALS). Seelos plans to enroll 160 patients with either familial or sporadic…
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience. Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…
Aural Analytics’ speech-based digital technology will be used to measure changes in speech in people with amyotrophic lateral sclerosis (ALS) as endpoints for the HEALEY ALS Platform Trial, which is evaluating multiple potential ALS treatments…
AC Immune is planning to advance its investigational anti-TDP-43 antibody into clinical testing for neurodegenerative diseases, like amyotrophic lateral sclerosis (ALS), in which TPD-43 protein aggregates play a major role in brain damage. The company announced the start of preclinical studies into this first-in-class antibody. This work will…
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