Foundation –

Gareth Evans

2003-11

WMozzies first logo was created by Gareth Evans in 2003

Ben Rude 2nd
IWMF President 2000-05

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 27^th 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.

Michael van Ewijk fundraising for IWMF Research

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.”

FUND RAISING TARGET COMPLETED.

December 9, 2021December 9, 2021

Very excited to report that the $150,000 target has been achieved and the IWMF Roadmap Project will receive the funding as per their agreement with the Leukaemia Foundation. We are very grateful to all the people who donated and we can all be proud to be part of a project that looking very deep into WM and hopefully will lead to further & better treatments. We also wish to acknowledge the assistance of the Leukaemia Foundation in first of all entering into the agreement with the IWMF and helping us with the Donation Page. Should you wish to donate, you can still donate to assist WMozzies by clicking on the donate button on the home page.

New treatment for Waldenström’s macroglobulinemia now available

October 28, 2021October 28, 2021

A new treatment for Waldenström's macroglobulinemia (WM) has been approved by the Therapeutic Goods Administration for adult patients who have received at least one prior therapy, or in first line treatment for patients unsuitable for chemo-immunotherapy, and also for adult patients with mantle cell lymphoma. BRUKINSA (zanubrutinib) was developed by BeiGene, a global, science-driven biotechnology company focused on developing innovative and affordable medicines to improve treatment outcomes and access for patients worldwide. WMozzies was proud to be invited by the Pharmaceutical Benefits Advisory Committee (PBAC) to take part in a pilot program as consumer advocates in the BRUKINSA PBAC decision process. WM patients will have immediate free of charge access to BRUKINSA through a BeiGene sponsored Pre-Reimbursement Access Program until such time that WM is listed for reimbursement on the Pharmaceutical Benefits Scheme. In a first for the PBAC, BeiGene expects to enter a facilitated resolution pathway in order to seek a listing date for WM. What is BRUKINSA? BRUKINSA is a small molecule inhibitor of Bruton’s tyrosine kinase (BTK) discovered by BeiGene scientists that is currently being evaluated globally in a broad clinical program as a monotherapy and in combination with other therapies to treat various B-cell malignancies. Because new BTK is continuously synthesised, BRUKINSA was specifically designed to deliver complete and sustained inhibition of the BTK protein by optimising bioavailability, half-life, and selectivity. With differentiated pharmacokinetics compared to other approved BTK inhibitors, BRUKINSA has been demonstrated to inhibit the proliferation of malignant B cells within a number of disease relevant tissues. For more information, see Products | BeiGene

WhiMSICAL Registry’s important publication

June 16, 2021June 16, 2021

The WhiMSICAL Registry’s publication of patient-entered data in the prestigious medical journal, American Journal of Hematology, presents important research for all WM patients. It has added to the field of WM Research by capturing real world WM treatment and quality of life outcomes. Congratulations to all WM patients who have entered their data into the WhiMSICAL Registry, and now published at American Journal of Hematology ajh.26173. More Registry participants are needed to strengthen the results. A further submission is planned to the 2021 American Society of Hematology Conference. This is to include updated details from existing and from new participants received by the deadline of 12^th July. The WhiMSICAL Registry, built through a patient-clinician investigator partnership, is a global database for WM patients to enter their own data. Key findings include:

Longest time to next treatment after 1^st line therapy - in patients treated with bendamustine rituximab
Better quality of life in those on Bruton tyrosine kinase inhibitors compared to recent chemotherapy.

Over 450 patients from 19 countries contributed to this first global registry for WM. Highlights of the study so far include:

Little consistency in 1^st line therapy choice globally, with 46 different types of therapies given!
USA patients commence their 1^st therapy almost 3 times faster than the rest of the world.
1^st line bendamustine rituximab has outperformed the Bruton tyrosine kinase inhibitors (BTKi, e.g., ibrutinib, zanubrutinib) and rituximab alone in time to next treatment. The findings are preliminary, however, without exact matching of the groups. More participants, and longer follow-up of existing participants are needed to confirm these exciting preliminary results.
Patients on BTKi report better quality of life scores than those who recently received other treatments.

COVID-19 vaccines are now rolling out globally. WM patients may achieve impaired vaccine responses due to their condition and treatment. To help assess the impact of COVID on patients with WM, the WhiMSICAL Registry has included a question (at question 19) on COVID-19 testing, infection and vaccination. Please contribute to this important and urgent research question for WM patients. From anywhere in the world, you can join the WhiMSICAL Registry by registering and completing consent at www.cart-wheel.org, and then filling out the questionnaire. Some data is always better than no data. Your answers can, and are recommended to be, continually updated. Please note that it does not all need to be done in one sitting; you can enter as much (or as little) as you are able to provide each time to access the Registry. (Naturally, the more data that is collected, the better the outcomes for further research.) For those already participating in WhiMSICAL, thank you for contributing your patient voice to peer-reviewed research. Please continue to update your data at www.cart-wheel.org, making sure to complete the newly added COVID-19 questions and update any changes to your treatment (question 9) and quality of life (questions 20 and 21). We need your help to provide “big data” to increase the power of this research by increasing the number of participants. Together, we can help answer some important questions in WM research as we search for a cure. For further information on WhiMSICAL Registry, click here WhiMSICAL Registry and Frequently Asked Questions or contact [email protected].

WMozzies information flyer

September 13, 2017September 13, 2017

WMozzies information flyer

The new WMozzies flyer is now available. It provides information about WMozzies and the support services provided to Waldenström's Macroglobulinemia patients throughout Australia. It is produced in a 3 column double sided fold-out format as shown below.