Renewal – Colin Perrott 2011-13

Leadership transition

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.

WMozzies logo created by Colin Perrott, inspired by Canadian friends

WMozzies Old Website

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

In 2011 Colin initiated a Quality of Life survey for NHL patients

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

http://www.scirp.org/journal/jct and http://dx.doi.org/10.4236/jct.2014.512115

The publication included “My Project” graphic shown here

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.