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Newborn screening and early treatment for spinal muscular atrophy can save both lives and money


Newborn screening and early treatment for spinal muscular atrophy can save both lives and money
Gene therapy for spinal muscular atrophy might have a high up-front price tag. But by screening and treating infants early, the therapy can save both lives and money in the long term.
By the time an infant with SMA starts showing symptoms, they ve already lost 90 per cent of their nerves – which is why early detection and treatment is so important. Photo: Unsplash
Spinal muscular atrophy (SMA), a type of motor neurone disease, is one of the deadliest genetic illnesses an infant can be diagnosed with. Caused by a missing or faulty gene called ‘SMN1’, the disease causes muscles to shrink and become weaker, limiting a baby’s ability to sit, walk, crawl, or even hold their head up. ....

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Critical leadership elements in times of crisis


Truthfulness, acknowledging uncertainty and understanding the workforce are key leadership elements, say senior health leaders.
“When people try to communicate uncertainty as certainty, that’s when you get into trouble,” said Professor Raina MacIntyre.
When Professor Sir Edward Byrne reflects on his time in the UK at the beginning of the COVID-19 pandemic in 2020, he recalls how much the country was unprepared for it. He speaks about the healthcare workforce and what he learnt about this critically important sector.
“There were ridiculously low numbers of ventilators in the country and not enough personal protective equipment to provide basic protection for staff,” Professor Byrne told a UNSW Sydney symposium about leadership in health during challenging times. “Almost every final year nursing medical student and clinical academic went up to the clinical frontline overnight.” ....

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Parents forced to visit daughter with leukemia on different shifts amid Sydney's Covid crisis

Parents forced to visit daughter with leukemia on different shifts amid Sydney's Covid crisis
dailymail.co.uk - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from dailymail.co.uk Daily Mail and Mail on Sunday newspapers.

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