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May 2023 Newsletter: Contents


May is Research Month Spring has sprung and with May upon us, it’s time to thank you for a successful Research Month. With our fundraising and research so intertwined we’d like to give you an idea of the current state of WM research and its future so we’ve put together a simplified snapshot of a complicated issue. The WMFC is always proud to remind you that most of our donations go towards funding research.  Donations also fund our goal of taking patient education programmes like the Educational Forums online to make them more accessible across Canada.  Your donations also go to [...]

May 2023 Newsletter: Contents2023-05-31T21:02:31-04:00

May Newsletter – Help with Travel+Lodging


Recently diagnosed and looking for a second opinion? Now there’s a travel and lodging assistance plan for Canadian WMers. Now available to WMers in Canada, the IWMF Travel & Lodging (T&L) Assistance Programme provides individuals with WM - or those being evaluated for WM - with financial assistance related to a second opinion about WM or confirmation of a WM diagnosis. The IWMF runs this programme in partnership with NORD, the U.S. National Organization for Rare Disorders, an American non-profit organization aiming to provide support for individuals with rare diseases. Download the NORD/IWMF flier about the Travel and Lodging Assistance programme [...]

May Newsletter – Help with Travel+Lodging2023-05-31T21:00:30-04:00

May Newsletter – Donate Your Data


You can donate your data too The nature of research is changing with the advent of AIs that can look for patterns in huge databases.  Your blood test results can enrich this landscape of data that AIs hunt through looking for clues. There’s an Australian database project called Whimsical linked to CART, the Center for Analysis of Rare Diseases.  Sharing your test results with the Whimsical study is another way to support WM research. Donating your data Sign up here to donate your data at CARTwheel - https://cart-wheel.biogrid.org.au/gui/Patient/Register.aspx   The long Whimsical story – the official study -  https://onlinelibrary.wiley.com/doi/10.1002/ajh.26173 The short Whimsical [...]

May Newsletter – Donate Your Data2023-05-31T20:54:17-04:00

May Newsletter – Recent Donations


Big thank yous Thank you to the Robert A. & Maria Bailey Fund at Edmonton Community Foundation who generously gave us $10,000 in March. Thank you to the Fondation Mirella & Lino Saputo in Quebec who kindly made a significant donation in response to the Board’s recent funding approaches to Canadian charitable foundations. And if you clicked here -- thank you, too.   Back to our newsletter

May Newsletter – Recent Donations2023-05-31T20:48:12-04:00

May Newsletter – A Look at Current Research


A look at current WM research and how your donations are put to work Here’s a quick snapshot of current areas of WM investigations discussed at the International Workshop on WM held at Madrid in 2022.   Two WMFC assisted projects are also included. In addition to the science our research snapshot also includes a ‘soft’ research project about an issue that we as patients all have to deal with – what do we want from our treatments? The WM research landscape is changing Research continues to seek out what causes our B cells to tip over the edge and become WM [...]

May Newsletter – A Look at Current Research2023-05-31T20:49:02-04:00

May Newsletter – Where to Look for Research


Where to find more information about WM research The IWMF's Torch magazine is a good place to follow the ever-changing path of WM research and treatments.  We’d recommend it. You'll find the current and back issues of Torch here where you can also sign up with the IWMF.  https://iwmf.com/iwmf-torch/ For the most recent blood and cancer research papers, you can find them below.  But here be technical dragons so for a useful overview, it’s often easier just to read the abstracts.   Leukemia and Lymphoma society of Canada - https://www.bloodcancers.ca/ Blood – a journal from The American Society of Hematology (ask [...]

May Newsletter – Where to Look for Research2023-05-31T20:51:19-04:00

May Newsletter – A Tribute to Dave Johnston


Dave Johnston’s long acquaintance with WM and the WMFC David R.  Johnston - Life with Waldenstrom's Macroglobulinemia In May 1998 David attributed his unexplained weight loss to the considerable physical effort he put in over several weeks cleaning up fallen branches on the grounds of his beloved family cottage which, along with huge swaths of Eastern Ontario and Western Quebec, had been hit by a catastrophic ice storm a few months earlier. However, around the same time, David's GP observed that his haemoglobin had dropped below normal levels to 122, and proceeded to look for a possible cause.  Unable to find [...]

May Newsletter – A Tribute to Dave Johnston2023-05-31T21:06:47-04:00

Current Canadian Research in WM


The WMFC and IWMF are co-funding cutting edge WM research at the Odette Cancer Centre, Sunnybrook Hospital, in Toronto. Two major WM events are occurring at Sunnybrook.  The first is Dr. Neil Berinstein’s pan-Canadian BRAWM trial that is headquartered at Sunnybrook.  This exciting trial combines Bendamustine, Rituximab and the BTK inhibitor, Acalabrutinib (BRA) for first line treatment in WM.  Within a few months it is expected that the trial will have filled all 59 openings in this coast-to-coast trial. The second event arises from the first.  Patients in the BRAWM trial have blood and marrow samples taken before, during and after [...]

Current Canadian Research in WM2023-04-20T17:17:57-04:00

Diagnostic and Response Criteria: IWWM-11 Consensus Panel 4


Consensus Panel 4 (CP4) of the 11th International Workshop on Waldenstrom's Macroglobulinemia (IWWM-11) was tasked with reviewing the current criteria for diagnosis and response assessment.  Their report is available here.

Diagnostic and Response Criteria: IWWM-11 Consensus Panel 42023-04-20T08:15:56-04:00

Management of WM-Related Amyloidosis: IWWM-11 Consensus Panel 6


Consensus Panel 6 (CP6) of the 11th International Workshop on Waldenström's Macroglobulinemia (IWWM-11) was tasked with reviewing the state of the art for diagnosis, prognosis, and therapy of AL amyloidosis associated with Waldenström macroglobulinemia (WM).  Their report is available here.

Management of WM-Related Amyloidosis: IWWM-11 Consensus Panel 62023-04-18T21:09:54-04:00
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