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Ok, I was a little daunted at being asked to write a spiel about the conference and I must confess to missing a few of the speakers just in case you feel I missed out a really poignant speaker. Interestingly enough this report on the conference turned into something unexpected and some of my views seemed to want to assert themselves!!

It’s really interesting when you come away from a conference to put into words what the most important thing was that you took away. Sometimes it’s not the obvious but the little things that fall into place over time. Or is it being open to others’ ideas and views that are so different to your own and understanding that there is a huge canyon in between but that’s alright too. For me there were vexing issues that I really have never thought of in much depth before – is it okay to test on the animal model? – don’t know why as it hasn’t bothered me before. I seem to be a hypocrite and say yes to rats and dogs but hold on I’m not sure about doing the same on monkeys. Where did that come from? We need research to happen and for that to proceed we need animal testing. Right??!! The focus of the second day of conference was the rather huge arena of newborn screening. What should and shouldn’t be included in this screening process? What a big big question.

One I thought I knew how I felt about – but there’s always the other side of the coin – the side you don’t know all that much about. Now I am in the thinking process and know how I feel about it but realize that there are thousands of other people out there who may well have a very valid but different opinion.

John, you ran a truly wonderful conference, full of the most interesting and varied speakers. I now know that we are so so lucky to have in Otago and Auckland some very brilliant researchers dedicated to their particular fields. There are many other very passionate and dedicated doctors, scientists, researchers - they are incredibly talented yet don’t lack the warmth and empathy necessary when engaging an audience. Then, equally important are those who are affected personally or otherwise by unusual or rare conditions and these opinions and thoughts are extremely necessary for the bigger picture.

It concerns me that the same funding issues are experienced by all those involved with rare things in life. Jon Skinner’s plight with funding for inherited heart conditions moved me, only as much as his passion. It is unfathomable to me that the big picture is never seen and I know, like everyone else, there are limited dollars. The politicians and associated governmental personnel who spoke at conference are very good at promising to listen and hear what you have to say, but they are also extremely efficient at not promising any affirmative action, but maybe this was just my take on things.

I will definitely be going to the next Conference. There is just too much to miss.

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