International Waldenstrom’s Macroglobulinemia’s Foundation (IWMF)

History

WMozzies was formed as a joint initiative by Ben Rude IWMF President 2000-05 and IWMF Australian member Gareth Evans.

WMozzies is an Affiliate member of IWMF. IWMF is based in the USA and was formed in 1998, but it beginnings started in 1994 with a 21 member email group.

The History of the IWMF is detailed at: http://www.iwmf.com/about-us/our-history

The IWMF currently has a worldwide membership of over 7,000, with Support Groups and affiliate organisations in virtually every continent.

IWMF Support Services

Today the IWMF:

Provides support to patients and their caregivers
Enables patients to communicate with one another
Sponsors WM educational forums featuring
prominent physicians and researchers
Publishes booklets on WM and its treatment
Supports research aimed at ultimately finding a cure for WM
Since 1999, the IWMF has invested over $8.1 million dollars in research on our disease.

Anyone joining WMozzies is also invited to join the IWMF. Go to: Join the IWMF – IWMF

IWMF Services

To access the full list of services: See Support on this menu.

The services highlighted above can be accessed from the links within each one, or through the IWMF services link below.

IWMF services include:

The IWMF Torch newsletter, produced 4 times a year, which you can receive in PDF format.

An Educational Forum, held in a different US city each year.

To see presentations from the most recent Educational Forum

and videos of presentations from it and previous Ed Forums, click here.

The IWMF-Connect discussion forum, this is an email talk list, where all matters regarding WM are discussed amongst patients & caregivers

Various publications & booklets with much useful information about WM that can be downloaded directly from the website.

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.