Welcome to the first newsletter from Myeloma New Zealand.
Setting up a new entity from scratch was always going to take time but we have made significant strides over the last month and I am pleased to report on them. I want to emphasise that we are determined to make this a patient-focused, patient-driven organisation and that we warmly welcome your involvement, your ideas and your contributions to our work.
Website
The website is now live at http://multiplemyeloma.org.nz/ and while it is still rudimentary, we are steadily adding content. Every week we are posting a new scientific ‘article of the week’ that we hope you’ll find topical and relevant. I encourage you to subscribe to the site and your ideas for features we could add to the website would be most welcome.
The private Facebook group has been set up and we have 18 people on board. Please do enrol and encourage others to join up. Future events such as patient seminars and speaker events will be set up on the Facebook page.
Patient seminar
The recent Wellington patient seminar was successful and thanks to those who turned out on a very inclement Wellington evening. Many thanks to David Nicholson for sharing his journey with us all. A second seminar will be planned in due course.
Medical myeloma interest group
Myeloma NZ is sponsoring a meeting of NZ myeloma physicians on August 9. The plan will be to form an interested group with representatives from each Blood and Cancer Centre in New Zealand.
Fundraising
We have several projects that we intend to present to potential funders. A high-level strategic plan has been developed to help us identify ways to help and support patients. Please feel free to contact us with any ideas you may have, both for projects you think we should consider and any ideas for fund-raising.
Advocacy
We plan to meet up with Pharmac representatives in the next month to push for widening of access to established drugs and also to encourage funding of novel agents such as the monoclonal antibodies.
Lastly, I would like to thank the talented group of trustees and other helpers for their effort in getting Myeloma NZ off the ground.
Ken Romeril
CEO