WMozzies was founded by Gareth Evans following a suggestion from Ben Rude, President of IWMF. Gareth had become a member of IWMF in 2001. By early 2003 Gareth had commenced sending messages to some other Australians who were members of IWMF. This was too cumbersome so Gareth established the Yahoo Group which started on 27th June. In founding the WMozzies it was not intended to match the expertise of the main IWMF talk list in medical matters.
The aim was to “support each other in an Aussie accent, and compare experiences of treatments, doctors, hospitals, and the Australian Health System”.
Initially Ben Rude suggested that the group name should be The Australian Regional Support Group of the International Waldenström’s Macroglobulinemia Foundation.
Gareth said “Phew!” and responded that”WMozzies sounds better than ARSGIWMF and lets us feel like we’re the bloodsuckers for a change.”
First WMozzies meeting in 2005
In June 2004 following some months of correspondence Ben Rude advised Gareth that the IWMF board has approved financial support for a Sydney workshop in April 2005 for WM patients to meet with the world’s WM experts. Imbued with the spirit of the 2000 Sydney Olympics, Gareth responded “you little ripper! (Aussie for you bewdy!). Gareth agreed to act as the local organiser liaising with Sara Mc Kinnie, IWMF Business Office in Sarasota FL USA. The task was a great challenge as Gareth was living at Bangalow, NSW 800km north of Sydney and he had never met any one of the 47 WMozzies then on the talk list. (NSW 19, Vic 9, Qld 3, SA 4, WA 6, TAS 1, NZ 2, US 3). In August 2004 Ben Rude confirmed that the meeting in Sydney would be on Sunday, April 10 2005. The speakers confirmed were the “big three” WM experts Dr Morie Gertz, Mayo Clinic, Rochester, Minnesota USA, Dr Robert Kyle, Mayo Clinic, Rochester, Minnesota USA and Dr Steve Treon, Dana Farber Cancer Institute, Harvard University, Boston, Massachusetts USA. All three were leading clinicians and researchers into WM, and members of the IWMF Scientific Advisory Committee. Sadly in January 2005 Ben Rude passed away. The Sydney meeting was very much Ben’s project and it was decided to go ahead as planned and to dedicate the meeting in Ben’s honour.
The Seminar was held prior to the 10th International Myeloma Workshop in Sydney at which Dr Kyle was a key speaker. Chairman of the organising committee was Professor Doug Joshua (IWMF Directory of Australian WM physicians). Other IWMF Australian WM physicians on the organising committee or the Scientific Program committee included Joy Ho, John Gibson, Noemi Horvarth and Miles Prince. Invitations to the IWMF PATIENT SEMINAR were issued jointly by IWMF and WMozzies. The 5 hour seminar was attended by 68 patients, carers and their doctors at the Novotel Rockford Sydney Darling Harbour. Members flew from as far as Perth (4000 km away) and from New Zealand. The agenda included meet and greet Australasian patients, caregivers and oncologists, opening remarks and introduction of IWMF representatives, including update of member services and research efforts, with discussion of Australasian participation in WM clinical trials. Presentation topics were “When to treat”, “Available therapies” and “Biologic aspects & New agents” with a final Question & Answer session with Drs. Gertz, Kyle & Treon. The Seminar was funded by IWMF, in order to maximise attendance by Australasian patients and their doctors. Contributions to the IWMF were not required for membership, or Seminar participation. The day was a great success. It remains the only physical meeting held until 2011.By 2009 the thousandth WMozzies Talk-list message had been notched up demonstrating its importance in keeping WMozzies in touch with each other.
Fund raising for IWMF Research in Tour Down Under
In January 2009 WMozzies Michael van Ewijk joined the Community Ride section of the Tour Down Under in which cancer survivor Lance Armstrong made his comeback to cycling. Michael’s sponsored 97 km ride raised money for the IWMF Research Fund. Michael pedalled hard for us. He completed the 97 Km in 3h 45m. He rode with 7,000 cyclists and a head wind all the way. He got over the big climb up Menglers Hill on the pedals. It was very scenic riding through the rolling hills and onto the Barossa Valley vineyards. Michael appreciated all donations of WMozzies in his fundraising for IWMF research.
End of era
Around 2010 Gareth suffered a serious health deterioration and became totally disengaged from his WMozzies leadership role and the online world. (Sadly he died on 1 July 2013)
Long time WMozzies Lyn and Harry Doorn said “We will remember Gareth for enriching our lives. Gareth has been a great educator to us when we knew little about Waldenström’s. We always looked forward to his emails and learned much about the spread, symptoms from Gareth. He worked hard to have Dr Steven Treon talk to us here in Sydney. Another of his great achievement to make us educated and give us hope.”