WE URGENTLY NEED MORE PARTICIPANTS IN WhiMSICAL by the 12th JULY.

June 22, 2021June 22, 2021

WE URGENTLY NEED MORE PARTICIPANTS IN WhiMSICAL by the 12th JULY. Congratulations to all who entered their data into the WhiMSICAL Registry. Your efforts have directly added to the field of WM research. Newly published patient-entered data provides new insights into WM-specific treatment outcomes and COVID vaccine responses. More participants are now needed by July 12^th to strengthen these results for presentation at the premier hematology conference: the American Society of Hematology Annual meeting 2021! The WhiMSICAL Registry, built through a patient-clinician investigator partnership, is a global database for WM patients to enter their own data. Results of the WhiMSICAL study have just been published in the prestigious American Journal of Hematology HERE. Key findings include the longest time to next treatment after 1^st line therapy in patients treated with bendamustine rituximab, and a 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. Published results from data entered by WMers into WhiMSICAL is freely available at the link above. Highlights of the study so far include: · Significant variability 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 validate these exciting preliminary results. · Patients on BTKi report better quality of life scores than those who recently received other treatments. As you know, COVID-19 vaccines are now rolling out globally. WM patients may achieve impaired vaccine responses due to their WM condition and treatment(s). As a result, new COVID-19 related questions on testing, infection and vaccination have been added to WhiMSICAL – please take the time to go to the registry and submit your information to this important and urgent research study 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. Your answers can, and are recommended to, be continually updated, especially at times of change to your condition or treatment. Please note that it doesn’t all need to be done in one sitting; you can enter as much (or as little) as you are able to provide each time you 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 return and 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 any support with participation or further information on WhiMSICAL, click HERE, or contact whimsical@iwmf.com REGISTER HERE

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 whimsical@iwmf.com.

Strategic Research Roadmap

June 4, 2020June 4, 2020

Be part of an international effort to cure Waldenström’s macroglobulinemia (WM)

With your help, WMozzies is looking to raise $150,000 over the next 2 years in support of the Research Strategy . With thanks to an incredible supporter, the first $40,000 in donations will be dollar matched up until 30 June 2020. By donating today, your gift will have a twice the impact. Be part of the next WM breakthrough and ensure people living with WM all around the world are given the best possible chance at curing our WM disease.

Help ensure people living with WM are not left behind

WM receives lower levels of research funding than many other forms of blood cancer and there are fewer opportunities for patients to access clinical trials. Therefore, investment in research is desperately needed to understand the drivers of WM, and to develop more targeted and effective therapies for people living with WM. The international WM community has come together to co-fund exciting research through the IWMF-LLS Strategic Research Roadmap Initiative.

IWMF-LLS Strategic Research Roadmap Initiative

The International Waldenström’s Macroglobulinemia Foundation (IWMF) and The Leukaemia and Lymphoma Society (LLS) have developed the IWMF-LLS Strategic Research Roadmap Initiative to help further knowledge in four key domains of WM research:

Genomics and epigenomics
Signalling
Immunology/immunotherapy
Bone marrow/tumour microenvironment

This research is to better understand the biology of WM, with the goals of improving quality of life for WM patients, discovering new treatments, and ultimately, finding a cure. Read more at Strategic Research Roadmap. Under the Roadmap Initiative, the IWMF awards Roadmap grants for 2-4 new research proposals each year, depending on funding availability. All proposals from around the world including Australia are reviewed by an independent committee composed of selected members of the IWMF Scientific Advisory Committee and other experts in the field. On behalf of the Waldenström’s community I ask for your help to support this vital initiative by making a tax-deductible donation to the Leukaemia Foundation before 30 June. You can make your gift online at DONATE here. We are a small, but passionate group of people who I believe can make this happen through our collective efforts. No gift is too big or too small. I encourage you to share this donation request with your relatives, friends, and work colleagues. Each gift will ensure that the pursuit for more effective, less toxic, and curative therapies for WM continues. More than ever these researchers need our support to keep going, as charities and research institutions face financial uncertainty and challenges. Through this crisis, I have found hope and comfort from seeing the many ways people are uniting and looking out for each other. Thank you for being part of our community. Andrew Warden

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.