President’s Report May 2017

Winter is on its way, but we still have the odd day that is quite mild and pleasant.

Firstly thank you all for your support at the National seminar here in Wellington this past weekend.

We had some long distance travellers amongst us, Dipton in the deep South, Nelson, Palmerston North, Wairarapa, Kapiti Coast, Auckland and our folk from Wellington.

Thank you to all of you for your help on the day, helping it run smoothly and the generous morning and afternoon teas, that Adrienne Burleigh, Tina Mclean and Sandra Forsyth put together for us.

We had some very special raffle prizes on the day donated by our members, Jo Harris and Yvonne Bird, which has helped cover the costs of the seminar. Judy Trewartha had also donated some lovely quilted crafts for sale for fund-raising for Scleroderma NZ.

John Spavin, worked non – stop all day long, doing lots of photography and taking down notes which you will be reading in this very interesting newsletter.

We were also treated with some very colourful art works from our own artist, Catherine Thompson. The selection of her paintings was a series of 8, which depicted her journey with scleroderma, a very moving piece of work.

Our line up of speakers was exceptional and I have had a great number of emails, of appreciation from attendees, which has been delightful.

We all learnt a lot and each of us took something home of value, which will help us in some way.

Gordon and I have started the year with a review of guidelines and recommendations for kidney monitoring. We are working with Dr Rebecca Grainger on this.

Next will be access to pulmonary arterial hypertension treatments here in NZ.

There seems to be some good research in progress in the way of biomarkers for lung disease and pulmonary arterial hypertension, which would be effective in monitoring and treatment for Scleroderma patients in the future.

I wish you all well, keep your core warm at least three layers of merino or its equivalent to help prevent internal Raynaud’s and peripheral Raynaud’s.

All the Very Best