Celebrating a medical breakthrough that could give affected families hope - News - The Lily Foundation
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Celebrating a medical breakthrough that could give affected families hope

Research

10 May 2023

We're delighted to read that in a UK first at least one baby has now been born using a pioneering IVF technique known as ‘mitochondrial donation’. This is a huge step forward in the fight against devastating mitochondrial diseases, which are life-limiting inherited conditions for which there is currently no cure.

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We played an instrumental role in bringing about a change to the law in 2015 to allow the use of this new mitochondrial replacement treatment, which has paved the way for this scientific breakthrough to take place.

In its simplest terms, the technique involves replacing the unhealthy mitochondria in a woman who carries mitochondrial disease with the healthy mitochondria from a donor woman during the process of IVF. The resulting baby would have all the genetic traits of the mother and father but would also have healthy mitochondria from a donor woman so would be free from the disease.

The work was pioneered by Professor Sir Doug Turnbull and his team at the Wellcome Centre for Mitochondrial Research at Newcastle University. It’s a fantastic example of the collaboration between science and patient, and our ongoing work to fund research and support patients affected by mitochondrial disease.

Limited details emerged after a journalist at The Guardian newspaper submitted a Freedom of Information request.

CEO Liz Curtis, who founded the charity back in 2007 after the loss of her baby daughter Lily to the disease, commented: “This is a fantastic scientific breakthrough. For over 15 years now we’ve been driving research and supporting families affected by this devastating disease. So we’re delighted to see that after the pivotal law change in 2015, which we helped drive, there is now hope for some mito families. However it’s still very early days, and we look forward to the research papers being published in the future, at which point we’ll be able to learn much more about the success of the technique. For now this is clearly a deeply personal matter so we must respect the privacy of everyone involved.”

Find out more about mitochondrial donation.

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