President’s Report

We have some exciting news for December: Kim Tocker, one of our members in Christchurch joined with Arthritis New Zealand to hold her second meeting in Christchurch.

Jan Ipenburg, a specialist Rheumatology Nurse from Christchurch Hospital, gave a talk about scleroderma, in general terms. She included a question and answer session.
Well done Kim. This is a big effort and

I know that your work is very much appreciated by all who have attended. Patients who belong to support groups and who take the time to attend support group meetings cope and feel better within themselves. I have included some benefits of belonging to a support group later in the this newsletter. The advice comes from the Mayo Clinic.
Maureen Kirby our specialist nurse in Invercargill has been extremely busy and supportive of our cause. Maureen produced calenders to help raise funds for Scleroderma, Arthritis New Zealand, Psoriasis New Zealand and Colitis New Zealand. This is a tremendous effort along with her busy full time position as specialist nurse and with a young family.

Maureen is very a dedicated nurse and is always there to help with any queries patients may have. Thank you so very Maureen for your exceptional commitment to scleroderma in New Zealand.
Scleroderma NZ Inc is developing well and I feel that we have achieved most of what we have set out to do this year.

We have the reprinting of the booklets on Understanding and Managing Scleroderma under way, which is a little behind than expected but we are heading in the right direction. That’s pleasing and we’ll all look forward to the New Zealand version in 2016.

New Zealand Post has donated a good number of prepaid envelopes. This will help when we post our booklets to members and GPs who would like to receive printed copies of the booklet. That’s a tremendous boost to our society.

Gordon and I had a meeting with Ken Scott, the representative for Acetelion. Acetelion is the pharmaceutical company that manufactures the pharmaceuticals for PAH. Acetelion has lost the contract with Pharmac for the drug Bosentan to a generic pharmaceutical company. That means that Acetelion will not be able to help with funding to print the New Zealand edition of Managing and Understanding Scleroderma.

Ken has a wealth of knowledge of scleroderma and has offered us any new updates on patient information that comes his way, which is much appreciated. I acknowledge all of the committee for a sterling effort in developing Scleroderma NZ Inc this year. It’s a remarkable effort from you all, knowing what you are all going through with this condition. And thank you to all of you for being members, you make Scleroderma NZ Inc.

Take care out there, have a very happy and healthy Christmas and New Year. We look forward to lots of positive and helpful developments for you all in the coming year.

Dianne