Presidents Report: September 2019

Dear All, time has flown by this past three months and our society has had some difficult times with the very sad loss of another three dearly loved and appreciated members of our society. Allison, Lorraine and Terry.

We will be feeling the grief especially the support group members from Invercargill, Nelson and South Auckland.

We all need to be kind to ourselves over this difficult time, and understand that we all will grieve differently. Please
remember to reach out to one another within your groups for support over this time. We have included a section on how to cope with grief. I hope that it will help.

I would also like to extend our sincere kindest wishes to Barbara and John Spavin. John is going through a difficult
time with his health and our love and support are extended to them both.

Also a huge thank you to those of you who have written in with your personal stories, they are very heartening and inspiring and will encourage us all. I look forward to reading more stories of your journeys with Scleroderma, they are much valued. You are all very brave and show a lot of courage, thank you so very much.

It is nice to see Spring, it has been long awaited, but a fairly mild winter all up. But the Raynaud’s still liked to make
itself sincerely known!

A huge thank you to Tina Mclean and Jenny Andrews for taking over the newsletter from Barbara and John. They had some big boots to fill, and they came through with full marks!. A big thank-you, it isn’t easy putting a National newsletter together, and they will rely on you all, out there to fill them in on your recent activities and helpful information.

We had a nice surprise back in July, When Scleroderma New Zealand and the Scleroderma Patient Intervention Network from Canada, formed a formal partnership. Currently we have five group leaders who have applied to go into the randomised trial for the SPIN leadership program. If any of us are in luck, at being picked, the trial will go for 13 weeks as follows: 13 weekly sessions of 60-90 minutes led by a trained instructor

Each week tackles one aspect of leading a support group, including structuring a group meeting, recruiting new members, fostering a positive group culture, supporting yourself as a leader, and many other topics

Participants can attend the online videoconference sessions from the comfort of their own homes

Supplementary resources include:

  1. A workbook that summarizes all modules.
  2. An online forum where participants can discuss what they’ve learned with other participants.
  3. An online Resource Centre with educational videos and support group activity ideas.

At the end of 13 weeks, participants receive a certificate attesting that they have successfully completed the program. Next in line we are currently organising a full day seminar in Christchurch for the 23rd of November at Burwood Hospital.

This is a combined effort of the members in the Christchurch group. We are currently getting a few speakers together. We will
look forward to sending out the program in the near future, so if you are in Christchurch at the time please go
along, you will be made most welcome.

Next on the agenda is a seminar in Invercargill which is being organised by Jenny Andrews for September 2020, which is terrific and then another great seminar in Hamilton organised by Linda Bell, a date to be finalised. Great efforts and I hope as many people as possible will be able to attend.

I hope you are all as well as can be, take time for yourselves, to look after your well-being, it is most important to help you through your Scleroderma journey. All the best,