Patient Educational Forum at Clinical School at Concord Hospital
WMozzies was an organiser of the patient educational forum held in Sydney on 25 October 2013. The keynote address was delivered by Professor Meletios Dimopoulos of the University of Athens, Greece. Professor Dimopoulos is also a member of the IWMF Scientific Advisory Committee and recipient of the IWMF Robert A. Kyle Award (given in recognition of outstanding contributions to the understanding of Waldenström’s Macroglobulinemia). The forum was held at the University of Sydney Clinical School at Concord Hospital. Myeloma patients also attended the forum, with Waldenström’s patients having a separate session stream with Professor Dimopoulos. In the WM stream Professor Dimopoulos spoke on new directions in WM research and therapy. In this session he responded to WM patients’ questions using the ‘Ask the Doctor’ format of IWMF Ed Forums. The forum was webcast. A WM exhibit was displayed before the forum. The materials sent out to Australia by the IWMF office were highly sought after, especially the IWMF booklets and DVDs of the IWMF Ed Forum sessions.
A Bloody Great Night Out! (Gala Cocktail Party) was held after the forum with Professor Dimopoulos attending. $110,000 was raised for blood cancer research. Eighty per cent of funds raised went towards blood cancer research at Concord Cancer Centre, Concord Hospital, and 20% towards Professor Dimopoulos’ world-leading research in Athens. “More than 350 guests attended. It was a wonderful night with a tremendous vibe and community spirit in the room,” said WMozzies’ Mary Nassibian, co-chair of the community fundraising committee. “The funds raised means that dozens of additional patients with blood cancer will be able to participate in world-leading clinical trials and have access to more than $1 million worth of new medicines. It offers greater hope for a cure and a better quality of life.”
Associate Professor Judith Trotman, Director, Clinical Research Unit, Concord Haematology, Concord Cancer Centre, said, “We currently collaborate with Professor Dimopoulos in relation to patient care. However, as with our other strong European partnerships, as a result of these funds raised, we will now be able to expand this collaboration in the area of research. This will ensure even greater success in finding cures for blood cancer patients in both Australia and Greece.”.
WM patient support meetings and telephone forums
There were WM patient support meetings held at the Leukaemia Foundation in Brisbane and Sydney. In addition two telephone forums for WMozzies in all States were held in 2014 hosted by the Leukaemia Foundation. By 2014 Patient education and support meetings were being held in three states. The first meeting in Melbourne was held in October 2014. South Australia and Western Australia are planning support meetings in 2015.
In Sydney the November 2014 meeting had a record attendance of thirty. Janelle Sullivan’s presentation giving a patient’s perspective of Waldenstrom’s was enthusiastically received. A follow-up session was held in February 2015 to allow more time for discussion and questions.