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National | Disability

Ngāti Rangitihi researcher working with indigenous to combat Huntington's disease

Dr Melanie Cheung has just returned from Rome where she represented indigenous communities at an audience with the Pope for those suffering from Huntington’s disease.

A religious gathering, a gathering of indigenous peoples.

Dr Cheung says, “It was really quite wonderful we were interested in going to meet the indigenous communities, so I was aware that the Venezuelans were indigenous, and because we work with Māori we wanted to make some connections between those communities.”

In an attempt to remove the stigma surrounding the incurable disease, the Pope held an audience with Huntington's sufferers, caregivers and researchers from 26 countries.

Dr Cheung explains, “So we recently went on a trip to the Vatican to meet the Pope, the kaupapa for that was that there are South American families from Venezuela, Argentina, Columbia and they're quite devout Catholics, one of those families, one of the researchers from those families approached the Vatican and asked if he could have audience with the Pope, and the Pope said he would rather meet the whole Huntington’s community.”

Huntington's disease is a brain disorder that causes cells in specific parts of the brain to die, resulting in impairment of both mental capability and physical control. Although incurable, Melanie and her team have had great results treating the symptoms.

“We're able to show that in the HD brain there are some large changes are taking place and that some of the brain areas that become disconnected where we think the cells are dying, they've become reconnected. And this is really clear positive evidence that there are some positive neurological changes taking place.”

She maintains that her research shows the early diagnosis of the disorder can help to address the symptoms.

“At the moment we work with 14 large Māori whānau, and our biggest whanau has got 16 children in it, and there's four generations of them, and our smallest whanau's got two. Basically, you know we have some really large whānau and if it happens at a 50% rate, therefore it's, there's a lot in our communities.”

As a result of the trip, Dr Melanie Cheung and her team will be working with indigenous from Venezuela to combat symptoms of this disease while also looking to begin a second trial here in New Zealand.