The Waldenstrom’s Weekly

July 2, 2021

Volume 1, Issue 15

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. The IWMF provides access to The Waldenstrom’s Weekly as a free service to WM community members to share WM related news and events. For more information, please contact


WhiMSICAL Research

The July 2021 IWMF Torch (issue 22.3)
is Now Online!


Hello to the entire WM community worldwide!
The July issue of the IWMF Torch is soon to hit the web and mailboxes, so here is a quick preview of what to expect.
In a bit of a deviation from past issues, we present a cover story from the international scene, an (almost) up-to-date report from a WMer on the devastating effects that COVID has been having on India. A member of our India affiliate, Jaya Mani, has written from a personal viewpoint about the pandemic; we are grateful to her and Saurabh Seroo, the affiliate lead, who has facilitated the article, for this insight into their country’s plight.
As the Torch continues to grow and slowly change to reflect all aspects of IWMF’s mission to educate WMers everywhere—as well as meet their expectations, you will notice some new columns and a variety of articles. We are also having discussions on what changes we might make in the support group reports section to make it more useful and interesting.
So keep tuned into the Torch, so to speak, and keep expecting useful information on WM, treatments, and related issues, in our research summaries, medical news roundup, professional meeting reports, and specialized topic articles.
We’re so glad to have you as readers of the Torch, and we welcome your suggestions and comments any time!
We are looking for a volunteer to create simple digital scientific illustrations for our articles. Our science writer summarizes research projects for the lay audience, and he’d like to work with someone to create graphics to illustrate aspects of the articles. Please contact Glenn Cantor,
Stay safe and well!
Shirley Ganse
Editor, IWMF Torch

The IWMF is excited to share that we have a new platform host for our Virtual Events, which includes Global Educational Webinars and Ed Forum Month in October. Check out our new IWMF Events site HERE, and register for our next program!



IWMF Global Educational Webinar
July 9, 2021 at 1:30PM U.S. EDT


ASCO Highlights
with Dr. Sheeba K. Thomas

About the presentation:
ASCO Highlights with Dr. Sheeba K. Thomas will examine the latest information about WM related research featured at the 2021 American Society of Clinical Oncology Annual Meeting.
About the presenter:
Dr. Thomas is a Professor in the Department of Lymphoma and Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Thomas is the principal investigator of a number of clinical trials evaluating novel therapies for patients with WM and multiple myeloma. Her clinical focus is on plasma cell disorders, including WM, multiple myeloma, and primary amyloidosis. She is a member of the Scientific Advisory Committee for the International Waldenstrom’s Macroglobulinemia Foundation.
WhiMSICAL Research

WMUK Webinar: Bing Neel Syndrome
August 9, 2021

11:00AM – 12:00PM BST (UK)


Dr Shirley D’Sa, Consultant Haematologist, will be talking about Bing Neel Syndrome and answering your questions.
Dr D’Sa will be joined by WMUK volunteer, Dorothy Hansen. The session is due to last approximately an hour, and there may be time for additional audience questions.
To submit any questions in advance, please email WMUK at Please note: WMUK cannot answer personal medical questions on this webinar. If you have particular concerns about your specific treatment, please seek advice from your consultant.


National Institutes of Health (NIH) Online Survey

COVID-19 Health Impact on Familial Cancer Syndromes Study

National Institutes of Health (NIH) is conducting an online survey and seeking help from anyone who is diagnosed with WM. This is a “Familial Cancer Syndromes Study” coordinated by NIH scientists Dr. Beth Kozel (NHLBI), Dr. Robert Hufnagel (NEI), and Dr. Tiffany Powell-Wiley (NHLBI) in collaboration with numerous NIH researchers and community advocacy groups. The goal is to understand the impact of COVID-19 in patients with rare diseases.
The Principal Investigator would be thrilled for non-familial WM patients to participate as well. For those who do not identify as familial cancer syndome, you can choose “other” at the diagnosis phase of the survey.
The survey takes approximately 30 minutes and should be completed and submitted by July 31, 2021. Participants who complete the online survey will be entered into a gift card raffle.
For any questions about this survey, please contact NIH:
Cellectar clinical trials ad

This is a paid clinical trial advertisement

Thanks to You!

The IWMF is able to offer our education, information and support programs free of charge, thanks to the generosity of WM community members like you.
Please consider a gift of support by clicking below.

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