News

From the science desk, a report on: The 12th International Workshop on Waldenström’s Macroglobulinemia (IWWM-12) that took place in Prague, Czech Republic from October 17-19, 2024 where leading experts gathered to discuss the latest advances in the understanding and treatment of WM, and The 66th annual meeting and exposition of the American Society of Hematology (ASH) that took place in San Diego, California from December 7-10, 2024. The WMFC reviewed all of the IWWM-12 abstracts submitted in Prague and found that very many of the presentations/posters simply confirmed the work of others.  For example, several abstracts confirmed three WM lineages: B [...]

Our intrepid West Coast reporter has pointed out a new clinical trial is recruiting WMers in Canada!  Although to take advantage of it, you have to be near, or be able to travel to, Vancouver. This trial, NCT05952037 (https://clinicaltrials.gov/study/NCT05952037), is using a new BCL-2 inhibitor, Sonrotoclax, and it is strictly for WM patients.  The trial is world-wide, but is recruiting in just the one location in Canada.  According to the clinicaltrials.gov website, that Canadian location is in North Vancouver, at the Lions Gate Hospital Chemotherapy Clinic. Interestingly, the trial has several "arms" running in parallel.  One of those arms is for [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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, [...]

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 [...]