News

Google’s Project Euphonia Asking Patients to Help With Speech Recognition Technology

Team Gleason and CureDuchenne have teamed with Google’s Project Euphonia to make automated speech recognition more accessible to people with neurological disorders, including Friedreich’s ataxia. Although automated speech recognition increasingly powers voice-activated technologies like Google Assistant, it struggles to adapt to changes in speech that accompany certain…

FDA to Review Confirmatory Trial Proposal for Omaveloxolone

Reata Pharmaceuticals, along with a group of key opinion leaders and the Friedreich’s Ataxia Research Alliance (FARA), have proposed the launch of a study to confirm the effectiveness of omaveloxolone (RTA 408), the company’s investigational oral therapy for Friedreich’s ataxia (FA). If accepted by the…

New Streaming Channel Showcases Rare Disease Films

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…

Partnership Again Supplies Adaptive Cycling Equipment to FA Patients

A collaborative effort once again will fund a grant program that provides fitness-promoting adaptive cycling equipment to Friedreich’s ataxia (FA) patients. A partnership of the Friedreich Ataxia Research Alliance (FARA), the Burrows Hill Foundation, Catrike, the Texas Irish Foundation, and UVA Sun Systems continues to support…

Blood Levels of 2 Proteins Seen as Possible Measure of Heart Health

Measuring blood levels of two proteins, N-terminal pro-brain natriuretic peptide (NT-proBNP) and troponin, may provide useful information about heart health in people with Friedreich’s ataxia (FA), a study suggests. The study, “Significance of NT-proBNP and High-Sensitivity Troponin in Friedreich Ataxia,” was published in the …