The 1997 IMF Patient & Family Seminar in Sydney gave a face to myeloma downunder, that is, in Australia and New Zealand. The seminar enabled many bonds to be formed and experiences shared and patients realised that they were not alone in fighting this rare cancer. The publicity surrounding the seminar also assisted in raising public awareness of the disease and its treatment. A further spin-off was an increasing number of multiple myeloma support groups.
Am0ong the first of these new support groups were the Canberra-region Multiple Myeloma Support Group and Myeloma-Victoria. The listing of the Canberra group on the IMF web site led to so many enquiries, that in January 1999 it was decided to establish a new organisation, Myeloma Australasia (MA), an Australasian network of support and information for multiple myeloma patients and carers.
The principal function of MA is to educate and inform patients, their families, doctors, nurses, and the wider community, about myeloma and its treatment. To do this, MA works through a network of myeloma and cancer support organisations while at the same time creating its own infra-structure of local coordinators who provide support or links to MA's Canberra base. Coordinators are now in place in most major Australian cities and several key regional centres, such as Cairns in far north Queensland. Coordinators are also to be found in each of New Zealand's major cities.
The MA brochure has been distributed to all Australian and New Zealand hospitals treating myeloma patients, as has the MA newsletter, Myeloma News. These two publications provide information and education. Among this information is a listing of more than forty documents dealing with a wide spectrum of interests, from disease explanation, through treatment, and to the emotional and physical issues that concern most cancer patients. These documents comprise MA?s Patient Information Pack which is available free of charge.
Myeloma Australasia is not a support group in the conventional sense. Rather, it is a network organisation which assists and supports those seeking to establish and/or run myeloma support groups. This assistance can take the form of direct help in establishing a group, providing resources or responding to specific enquiries.
Since the 1997 IMF seminar, the establishment of MA and the additional 1999 IMF Patient & Family Seminar in Sydney, the number of myeloma support groups has grown to four, along with Myeloma Victoria. These groups and their respective contact persons are listed below:
- Sydney (Myeloma Australasia): Monica Callachor, 02-9515-6577
- Canberra-region: Laurie Howell, 02-6251-5364
- Tasmania: Sue Donohue, 03-6334-8544
- South Australia: Pam Judge, 08-8152-0301
- Victoria: Bob Moran, 03-9817-4331]
Myeloma Australasia would like to acknowledge the support of Novartis Pharmaceutical Australia in enabling the support groups to operate.
Editor?s note: Membership of MA is free and those in Australia and New Zealand should
write to Laurie Howell, 35 Barada Crescent, Aranda ACT 2614 or e-mail him at: