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Registered Charitable Entity CC46016

The Potter Trust- Cure Kids

CARDIAC INHERITED SCREENING PROGRAMME

In August of 2006 The Trustees of the Potter Masonic Trust were approached by Cure Kids with a request for funds to assist in setting up a National Screening Programme for Sudden Deaths. The Trustees unanimously agreed to support this worthy cause with a grant of $150,000.

Long QT syndrome affects about one in 2000 people in New Zealand and is the leading cause of sudden unexpected death in young people.

The funding allowed the development of a new test which has dramatically improved the success rate of long QT detection. This new test has picked up approximately 30% of sudden deaths who actually have long QT syndrome that previously tested negative for it.

Because approximately 50% of their surviving family members will also have this genetic condition, this test breakthrough will save more lives as life-saving medications and treatments can be offered.

Two other major benefits have come out of this screening programme:

1)  Because of the publicity generated by Cure Kids and the research team from Starship Hospital three times as many live referrals for children and adults suspected of having long QT syndrome are being referred to Professor Jon Skinner's Clinic. So in the future, we should see a reduction of deaths due to this genetic condition.

2) Some of the families referred to the clinic do not have long QT, but other serious heart diseases have been picked up and appropriate treatment offered..

 

The QT interval is the time it takes for depolarisation and repolarisation of the ventricles of the heart. In long QT syndrome the duration of repolarisation (or recharging of the electrical system after each heart beat) is longer than normal.

This may result in a very fast, abnormal heart rhythm (an arrhythmia). When this rhythm occurs, no blood is pumped out from the heart and the brain quickly becomes deprived of oxygen, causing sudden loss of consciousness and in some cases sudden death.

September 2008

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