April 17th is Waldenstrom’s World Awareness Day


The WMFC is recognizing and celebrating World Awareness Day for WM! That's one week from today, on Dr. Jan Gösta Waldenström's birthday -- April 17th. This is a worldwide event to raise the awareness of WM. Naturally we do not need to raise awareness of WM among you, our members, as you are already far too aware of this disease. But you can help raise awareness of the disease among everyone else. If you have social media accounts, please post one of the following, or something along these lines, on April 17th: Have you ever heard of #WaldenstromsMacroglobulinemia (#WM)? Can you [...]

April 17th is Waldenstrom’s World Awareness Day2024-04-10T07:09:19-04:00

BRAWM Trial Approaching Completion


The WMFC has been closely following the progress of the BRAWM trial because it is the only Canadian clinical treatment trial strictly for WM patients.   As Principal Investigator Dr. Neil Berinstein reported in the 2023 ASH conference, “initial clinical results show that this treatment induces a high percentage of CR + VGPRs”. It has come to our attention that there are only 6 spots left in this 59-patient Canadian WM trial.  Access for most Canadians is not an issue, as there are 9 (nine!) trial locations across Canada: Halifax, Laval, Montreal, Ottawa, Toronto, Hamilton, Calgary, Edmonton, and Vancouver.  As mentioned [...]

BRAWM Trial Approaching Completion2024-03-14T18:18:45-04:00

What is a “Drug Access Navigator” (DAN)?


An oncology DAN is someone who investigates and coordinates funding for a patient’s prescribed drug therapy. The oncology DAN examines all possible options for funding and takes some of the burden off patients in coordinating this part of their care.  The focus of the oncology Drug Access Navigator is to coordinate funding for those drugs not funded through the hospital formulary.  (And remember, every province has a different formulary, listing drugs that it covers.) Each DAN stays up to date on drug plan submission processes, temporary drug release programs, and financial assistance options.  Their role is to keep both the patient [...]

What is a “Drug Access Navigator” (DAN)?2024-03-08T11:33:34-05:00

The WMFC’s next research projects


With your kind donations and in partnership with the IWMF, the WMFC has committed $100,000, over two years, towards each of the following major WM research projects: Following our support of Dr. Zachary Hunter’s previous successful research at the Dana-Farber Cancer Institute at Harvard University we are now supporting another.  Dr. Hunter is looking ever more closely at the inner workings of WM with a study of the different versions of WM-related genes (called isoforms), finding new versions and studying how these genes evolve in WM.  It’s a two year US$480,000 project. For the first time we have an opportunity to [...]

The WMFC’s next research projects2023-12-27T11:33:17-05:00

Two Booklets Now Available!


In partnership with the IWMF, we are thrilled to make available to you two booklets that are part of the Global Initiative for education of both patients and physicians, worldwide. And through the generosity of educational grants from BeiGene and Janssen, printed copies have been put in the mail to our WMFC members (as of about Nov. 1, 2023).  And we will continue sending out copies to new members as long as our supplies last! Of course, you can download and print your own copies using the links below. The first booklet, Essential Information: A Patient's Guide, answers the questions you [...]

Two Booklets Now Available!2023-11-29T17:38:46-05:00

2023 American Society of Hematology Conference


This time of year, the presentations at the ASH (American Society of Hematology) Conference become available.  Remembering that conference presentations do not go through a full peer review (unlike journal articles), they do give us an idea of what research is being done, and what kinds of results are being seen. You can access 75 items that mention the word "macroglobulinemia", here.  We're not suggesting you investigate all of them, but they are certainly available for your perusal. There are three in particular, though, that you may find of note. This paper is an interim report on our Canadian BRAWM trial, [...]

2023 American Society of Hematology Conference2023-11-09T15:29:57-05:00

AI applied to WM??


Your editors recently acquired access to an older version of ChatGPT (3.5, if anyone is tracking these things).  Being of an inquiring mind, they gave the system the following instructions: "Always assume the request or question is asked in the context of Waldenstrom's Macroglobulinemia (WM). You will respond with information about Waldenstrom's Macroglobulinemia. This information must be based on the latest science and research." Then, of course, they told it "Write me a poem". Offered for your amusement, this was the result.  (And our apologies to the French translators!) In the realm of Waldenstrom's reign, A tale of cells that [...]

AI applied to WM??2023-11-07T10:14:44-05:00

Abstracts from ASCO 2023


For those interested in keeping up with the latest research, abstracts from the 2023 American Society of Clinical Oncology (ASCO) Annual Meeting have been published.  Here’s a link to a search of the abstracts that mention WM -- seven of them. If you are looking for "what are the possible new treatments", there is one abstract, looking at a new BCL-2 inhibitor, that might be of interest. Of course, your interests may be in different abstracts.  As WMers, we are all so different when it comes to the details. And of course, ASCO should not be confused with ASH, which [...]

Abstracts from ASCO 20232023-06-13T15:20:20-04:00

IWMF Announces Financial Assistance for Second Opinions


The IWMF has recently announced its first-ever financial assistance program, to assist those seeking second opinions with travel and lodging costs.  According to their flyer, "in many cases, residents from outside the U.S. may be eligible".  The WMFC has no further information on what opportunities this might bring for Canadians seeking second opinions, whether from elsewhere within Canada, or from the U.S. For more information, the flyer is accessible at this link. To quote from the IWMF's announcement: Over the past year, we have been collaborating with The National Organization for Rare Disorders (NORD) on a second opinion financial assistance [...]

IWMF Announces Financial Assistance for Second Opinions2023-03-29T13:08:52-04:00

IWWM-11 (2022) Summary Published


Every two years, the International Workshop on WM (IWWM) brings together worldwide experts to share their latest understanding of the diagnosis and treatment of WM.  It promotes "targeted research, clinical care methods, education, training, and advocacy for Waldenstrom’s macroglobulinemia". A report summarizing the presentations at the conference has been published, and is available at -- click on the "Download PDF" box on the right. The chapters include summaries of presentations under the topics: New insights into BTKi treatment of Waldenström’s macroglobulinemia Management of WM patients previously exposed to BTK-inhibitors BTK inhibition in Waldenström’s macroglobulinemia: trial updates and biomarker analysis Emergent [...]

IWWM-11 (2022) Summary Published2023-03-09T08:23:32-05:00
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