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Medicine United Kingdom Science

First UK Child To Receive Gene Therapy For Fatal Genetic Disorder Is Now Healthy 11

A 19-month-old girl named Teddi recently became the first child in the U.K. outside a clinical trial to receive a new gene therapy for metachromatic leukodystrophy (MLD), a fatal genetic disorder, the National Health Service (NHS) announced. Roughly six months out from treatment, "Teddi is a happy and healthy toddler showing no signs of the devastating disease she was born with," the NHS statement reads. Live Science reports: The genetic disorder MLD disrupts cells' ability to break down sulfatides, a fatty material used to insulate the wiring that runs through the white matter of the brain and much of the nervous system beyond the brain. Sulfatide buildup destroys brain and nerve cells, resulting in cognitive problems, a loss of motor control and sensation, seizures, paralysis and blindness, according to the Genetic and Rare Diseases Information Center. Eventually, the disorder leads to death. [...]

The new gene therapy, called Libmeldy (generic name atidarsagene autotemcel), was only recently cleared for use by the NHS and works by inserting into the body working copies of the genes that are faulty in MLD, thus restoring the ability to break down sulfatides. Libmeldy is made using stem cells that are derived from a patient's blood or bone marrow and can give rise to different types of blood cells, according to the European Medicines Agency (EMA). These stem cells carry the new, functional genes into the body, where they give rise to white blood cells that travel through the bloodstream. In clinical trials, Libmeldy offered clear benefits to infantile and juvenile patients who hadn't yet developed MLD symptoms; these patients were able to break down sulfatides at normal rates and showed typical patterns of motor development, for example. The benefit of the therapy seemed to last several years, but at this point, "it is not yet clear whether it will persist life-long, and extended follow-up is needed," the EMA noted.
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First UK Child To Receive Gene Therapy For Fatal Genetic Disorder Is Now Healthy

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  • Good (Score:5, Interesting)

    by backslashdot ( 95548 ) on Saturday February 18, 2023 @03:01AM (#63303045)

    Gene editing is here to stay, and that's a good thing. The already existent laws against assault and violence make it illegal to do something harmful with it. As for idiots who think gene editing can be banned, they are really stupid. You cannot hope to enforce any ban on gene editing any more than you can prevent say fentanyl synthesis .. in fact the latter is harder. Gene editing can be done cheap, like it or not. All you need is a decently equipped lab, in fact many DIY Biologists have labs that are adequate for it. None of the equipment needed is particularly hard to build or purchase. Biohackers have been doing gene editing for many years now, google it.

    • The already existent laws against assault and violence make it illegal to do something harmful with it.

      Not really. It hasn't been tested in court yet.

    • 'The already existent laws against assault and violence make it illegal to do something harmful with it.'

      Whilst such laws may constrain behaviour within Western countries, it won't prevent abuses in countries with weaker or non-existence legal frameworks; the fact that the mad scientist with a secret lab trope is mainstay of many bad SF books doesn't mean it's not valid...

      https://www.dailymail.co.uk/ne... [dailymail.co.uk]

      • Yes I compared it to fentanyl production, which is illegal but rogue people do it, regardless of how badly we don't want them to.

Keep up the good work! But please don't ask me to help.

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