Newsletter: Spring 2020

Hello Everybody

It is hard to believe that we are nearly two thirds through the year and what a year it has been. The COVID-19 pandemic has impacted on our seminars and other activities this year and we were disappointed to have to cancel the Whangarei seminar at the last minute with the Auckland lockdown. We are hoping that the Hamilton seminar which is scheduled for September 5th will still take place.

We are pleased to report that an art auction fundraiser took place in Wellington on Friday 14th August and was very successful. We are extremely indebted to Ron Epskamp at Exhibitions Gallery for hosting the event and for his stable of generous artists for donating several wonderful pieces of art. The proceeds will be used towards our comprehensive and well-managed website and a regular schedule of patient and carer seminars held across New Zealand.

The Facebook group continues to be very active and has now reached just over 400 in membership. The 400th person to join won a $100 Prezzy card.

Planning for the 3rd Myeloma Summit for health professionals is going ahead for the meeting in Queenstown on the 13th to 15th November. Several speakers may have to end up giving virtual presentations. It will be a great opportunity to meet up in person as most haematology meetings this year have gone virtual.

We continue to practice advocacy for our patients in the form of talking to Pharmac about the myeloma pipeline and I have visited in person to push for novel therapies in the relapsed/refractory setting that is an unmet clinical need. Let us hope for some good news after the CATSOP meeting happening soon. Last year at the Health Select Committee, we mentioned six drugs but only one has ended up being funded, so more work to do.

This year has turned out to be unprecedented and a challenging time for the community and for the activities of charities such as ourselves. Let us hope for some clarity and hope by the end of the year.

Keep safe.

Nga mihi

Ken Romeril