About Us

Myeloma New Zealand – helping New Zealanders live with myeloma

If you or your loved one have been diagnosed with multiple myeloma, we’re here to help you.

About Myeloma New Zealand

Myeloma New Zealand is a charitable trust established in 2016 by the late Dr Ken Romeril, who was a leading New Zealand haematologist. Our purpose is to focus specifically on myeloma and to improve the quality of life and survival of New Zealanders living with it.

We are primarily a patient advocacy organisation, that seeks to empower patients with information, research and support; to advocate with government to allow myeloma patients access to the remarkable treatments that are transforming lives and survival in other comparable countries; and to raise awareness and understanding among the general public of myeloma, the second most common of blood cancers. We identify and support strategies and research initiatives that will both improve the quality of life of those living with myeloma and extend their lives

About myeloma

Myeloma is an incurable blood cancer of the plasma cells which are usually found in the bone marrow. Plasma cells are part of your immune system.

There are approximately 3000 New Zealanders, of whom 60% are male, are currently living with myeloma. Around 450 new cases are reported each year, and just over 200 deaths. The average age of diagnosis is around 65 but it can also occur in patients much younger than this. It is our second most common blood cancer. While myeloma is an incurable cancer, patients can live with myeloma for many years.

Meet the team

Barbara Horne

Barbara Horne

Chair and Trustee

Barbara has had an extensive career in leadership, operational and customer-facing roles in the motor industry and in banking.  She is currently Head of Conduct and Customer Inclusion at BNZ.  Her strong track record in understanding the fundamentals that enable organisations to thrive has been invaluable in helping Myeloma New Zealand move towards achieving its vision.

Barbara’s involvement with myeloma began with her husband’s diagnosis in 2015, leading her to develop a deep understanding of the disease, the treatment pathways, and the huge challenges faced by patients and their families.

Joy Wilkie

Joy Wilkie

Trustee

Joy Wilkie, Ngati Tarawhai and Ngai Te Rangi from her mother, Pakeha from her father, was diagnosed with multi-focal plasmacytoma in 2015, at the age of 59. She has amazing support from her son Jack, and her daughter Te Moana, who at 21 gave up a year of her life to care for her mother through chemotherapy and her stem cell transplant. Remission is fantastic for Joy and her children.

Joy is committed to advocating for myeloma patients, for the best possible care and treatment in NZ, as in comparable countries, and to supporting our haematologists who are striving so hard to progress multiple myeloma from an incurable disease to a chronic one.

Nichola Oakenfull

Nichola Oakenfull

Trustee

Nichola has been living with multiple myeloma since mid-2020 when she was diagnosed at 41.

Nichola has worked in Industrial/Employment Relations and HR for over 20 years, in the private and public sectors in New Zealand and the UK. She also worked in Japan for two years. Nichola has a son who was six years old when she was diagnosed with myeloma. Nichola and her husband have a residential building company in Wellington.

Myeloma treatments are improving all the time and Nichola is optimistic that one day a cure will be found. However, New Zealand does not fund many of the modern treatments and testing available overseas. One of the reasons Nichola was keen to become involved with Myeloma New Zealand is to advocate for these to be government funded. Nichola also wants to help improve the life of those living with myeloma and their loved ones, by way of information and education, and other appropriate supports.

Kelly Harrison

Kelly Harrison

Clinical Nurse Specialist Haematology – Wellington Hospital

She is the Clinical Nurse Specialist who works specifically with people with myeloma.

Kelly is often the main point of contact for myeloma patients at the hospital. Her role is to make patient care as seamless as possible and is there to answer any medical questions about treatment or continued care.

Previous team member

Ken Romeril MNZM, MBChB, FRACP, FRCPA

Ken Romeril MNZM, MBChB, FRACP, FRCPA

Multiple Myeloma NZ Founder

Ken is a retired clinical haematologist with long experience in treating malignant blood disorders. After training at Otago, in Sydney and Southhampton, in the UK, he worked at the Blood and Cancer Centre at Wellington Hospital for 26 years until 2016. Over recent years he has focused on multiple myeloma and helped establish Wellington Hospital as New Zealand’s leading centre, with specialized myeloma clinics and a major centre for clinical trials. The author of 27 publications in peer reviewed journals, Ken is a member of the American Society of Haematology (ASH) and the European Haematology Association (EHA).

Ken is a past chair of the Myeloma section of the based in Melbourne-based Australasian Leukaemia & Lymphoma Group (ALLG), which is the principal trial organization for blood cancers.

In the New Year Honors 2022, Ken was awarded the New Zealand Order of Merit for services to haematology.