President’s report December 2018

Hello everyone, well where did that year go to?

First of all a huge thank you to the Scleroderma NZ committee, they have had their work cut out for them this year, they have been a huge support and I would like very much to show my appreciation, it has been truly valued.

A big thank you also to Barbara and John Spavin who have worked hard on these wonderful newsletters, apart from their continued support on the committee, coming up ten years now. Their work has been a big asset to Scleroderma NZ.

Also a big thank you to all of you who have made some very much appreciated donations to Scleroderma New Zealand this year. Your donations are greatly appreciated and will be used for the good of the whole society throughout New Zealand.

By now most of us would have had our Christmas get-togethers. We have one last one to attend in Palmerston North. Chris Carlyon has very kindly invited the Wellington group to meet up with her Palmerston North group to enjoy a high tea at her home, which we are very much looking forward to.

In October Gordon and I had the pleasure of attending Linda Bell’s Hamilton scleroderma seminar, it was terrific, we personally learnt a lot and enjoyed ourselves. A nice pleasure to attend someone else’s seminar, and we greatly respected the amount of work that Linda and her family put in, to produce such a wonderful day. I have a write up later in the newsletter.

Medical Advisory Board

A big landmark for us this year is that Scleroderma New Zealand now has a Medical Advisory Board. We have rheumatologists from Auckland, Dr Kristine Ng, Wellington, Dr Rebecca Grainger, Christchurch, Professor Lisa Stamp, also President of the New Zealand Rheumatology Association, Dunedin, Associate Professor Simon Stebbings, along with two keen specialist rheumatology nurses, from Greymouth, nurse Maureen Anderson, and from Hamilton, nurse Anna Schollum. We are currently awaiting a reply from one other doctor, but we are very optimistic.

The objective of the Medical Advisory Board is to provide clinical and scientific advice of a medical nature to Scleroderma New Zealand. Scleroderma New Zealand’s responsibilities will be to notify the Medical Advisory Board of any academic publications produced by Scleroderma New Zealand. Scleroderma New Zealand will seek advice from the Medical Advisory Board when lobbying Government for any health services. The Medical Advisory Board’s responsibility will be to report to Scleroderma NZ.

A more detailed outline of the Medical Advisory Board will be in the next newsletter.

In February 2019 Julius Ikitogia has offered to run a half marathon around the bays in Wellington to fund-raise and to raise awareness for Scleroderma New Zealand. A walking group from Island Bay will be joining in the fun, to support us too. We hope to have a few of us at the finish line to welcome in our supporters. So a huge thank you to Julius and the Island Bay Walking Group for their support.

We hope to have seminars in Wellington, Auckland, Christchurch and Southland/Dunedin next year.

We are also looking at starting up a few more coffee groups around the country in the regional areas along with a few in Auckland City, as travel can be difficult.

We hope you all have a safe and enjoyable Festive Season, and we look forward to catching you all up in the New Year.

All the best,