Newsletter: June 2018

Greetings as the days get shorter.

Thanks to all the people who turned out for our last Wellington seminar on February 21. Dr Rob Weinkove delivered a masterly talk on Car –T cell therapy which was very topical as clinical trials are likely to begin in Wellington by end of this year. The initial patients recruited will be high risk lymphoid blood cancers but there are plans to also develop a myeloma platform down the line.

The Auckland Seminar at the new North Shore Hospital auditorium was also very well attended and there were presentations from Drs Henry Chan, David Simpson . Leanne Berkahn and an orthopaedic surgeon and a radiologist. The discussion that followed was very lively and the meeting was judged great success.

Fresh content such as the regular research reviews and conference.
Summaries have been added and we are working on making some changes to the web-site so that it will be easier to navigate around. Any ideas for articles are welcome.

The private Facebook group continues to grow very well and now has 116 members. The discussion has been excellent and the site is proving to be a useful information source. We encourage more people to join up and welcome more South Island participants.

This continues to go well and we have been fortunate to have two recent generous donations. One from and anonymous benefactor and another from Celgene.

Burden of disease report
This continues to be a work in progress and interesting information has been accumulated. The report is scheduled to be completed by mid September and an official Parliament Breakfast launch planned for October.

Queenstown Summit Meeting
The organization for this meeting is well on track and we are fortunate to have Professor Donna Reece from Toronto as the keynote speaker. The full agenda will be available by the end of this month.

MPN  Group advocacy
I have recently been involved in helping the myelo-proliferative neoplasm group become a stronger patient voice. They have set up a Facebook page which already has 55 members and is very active. They are similar to myeloma patients in that there is a definite clinical unmet need for certain drugs. I hope to be of some assistance in that area.

Otago Myeloma Research Unit (OMRU)
This is a new venture headed up by Professor Ian Morrison of the University of Otago. They are doing myeloma epidemiology research in New Zealand and hope to also look at genetics and biomarkers. We may be able to get Ian up to speak at our next seminar.



Ken Romeril

CEO  Myeloma NZ