Renewal – Colin Perrott 2011-13
In April 2011 in assuming leadership Colin “thanked Gareth Evans who created and led the WMozzies support group and has helped many people along the way. As is the course of things, Gareth has faced health challenges this year – and rose to the occasion of course. He has now stepped aside but remains Founder of the group.”
Colin recently reflected that “If I hadn’t known Gareth personally it likely wouldn’t have happened. Ann and I had been US residents since 1988 and US citizens since 2002. Gareth noticed an Australian amid the WMer ranks in the USA late 2004 and reached out, as was his strength back then before his world started to come apart.”
Colin had personally felt frustration and torment in the years prior to diagnosis. Medical and social support is not easy to find when your aliment is exceptionally rare. The problem is acute in Australia with a small population spread over a vast land. This need was originally seen by Gareth and Ben Rude when WM Mozzies was founded.
At IWMF Educational Forums in Las Vegas and Los Angeles Colin had met other Australians including Peter Carr (Queensland), Peter Marfleet (then Victoria) and Andrew Warden (NSW). This was the catalyst for change in Australia. It was agreed that the Leukaemia Foundation (LF) should be the flagship for Australian efforts to support to the WMozzies community. The LF’s services range was excellent from transporting patients to therapy points and providing “family” accommodation nearby, to providing educational support centrally and at regional oncology units throughout the country, and to sponsoring research. As their slogan LF have “Vision to Cure, Mission to Care.” It was also seen as important for WMozzies to strengthen the ties with the IWMF far away.
Initial support meeting
The Leukaemia Foundation’s “Lymphoma News” in mid-2011 invited those interested in support for Waldenström’s Macroglobulinemia to find out more. Feedback was requested on whether patients or their family and friends would benefit from support meetings to enable WM patients to get together face to face to learn, share and discuss aspects of their journey. Similarly expressions of interest were sought for an Australian wide telephone forum.
Queensland the location of the Leukaemia Foundation’s head office was chosen as the launch site for the new support initiative for the WMozzies community. The aim was to offer patients, caregivers and professionals active support with physical reach across the nation. The leader of the work was Nicole Douglas, the Leukaemia Foundation support services coordinator in Brisbane.
New website and logo
During 2011, Colin began building a new website www.wmozzies.com and to create a new WMozzies logo.
The website attempted to provide a patient and doctors “grab bag” of information. The concept was to provide access to solid information but keep the site as simple as possible.
Many patients did not know how to explore virtual cities.
Most doctors didn’t have time to spare. In Australia there are issued treatment guidelines that failed to recognise information that has come available in the last decade.
Quality of Life survey
ENHANCING QUALITY OF LIFE WITH WALDENSTROM’S
with Frances Lavis, BA (Hons), Colin Perrott, PhD, Rhonda F. Brown, PhD,
Einar B. Thorsteinsson, PhD.
Most of those in the survey were actually WM patient members of the WMozzies Talk-List.
The survey results were published in the Journal of Cancer Therapy Online October 2014
The publication included “My Project” graphic shown here