The Waldenstrom’s Weekly

April 1, 2022

Volume 2, Issue 12

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


Mark Your Calendar!
Donations made to the IWMF
during the 2022 Giving Challenge
will be TRIPLE matched.

Logo Rare Disease Day


The April 2022 IWMF Torch (Issue 23.2)
is Now Online!

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Hello to all!

We keep hoping the pandemic is finally going to let up around the world, but it seems to come and go with almost predictable regularity. Even if it’s on the wane, I know many of us will be wearing masks for a long time to come.

Also predictable is that as another quarter passes on the calendar, another Torch is on its way to you! This time we look at the medical side of Bing Neel Syndrome with Dr. Jorge Castillo of Dana-Farber Cancer Institute, as well as a personal story by Julie Davidson of her own journey with this rare WM development.

Torch features continue to evolve, and we now have “The Torchbearer’s Report,” a regular column guest-written by IWMF Board members and others who tirelessly work to support the IWMF and its vision. As usual, you will also find information about IWMF research projects, as well as news of treatments, clinical trials, and other WM-relevant topics from around the world.

If you want to know what the US government is doing to address concerns of those with rare diseases, our legislative update will inform you and perhaps inspire you to get more involved in supporting the issues that can affect all of us. Readers will find it interesting to learn what is going on in the international WM world from China to France to Australia to the UK.

So, look for your print copy of the Torch in the weeks after April 1, when it will be posted online at

Best wishes for health and happiness!

Shirley Ganse

Editor, IWMF Torch


Recording Available!
IWMF Global Educational Webinar

An Overview of Amyloidosis and WM with Dr. Morie Gertz


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About the presentation:

This program will inform participants about the cause, signs/symptoms, diagnosis, and treatment of amyloidosis.

*Please note that you will need to register at the link below to watch the recording on demand.

Bing Neel Syndrome Recording Available
Featuring Dr. Shirley D’Sa

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From Bing Neel Support Group Co-Leader, Julie Davidson:

We had the pleasure of watching a video presentation by Dr. Shirley D’Sa at the March 20, 2022 Bing Neel Support Group Zoom Meetings. Dr. D’Sa is a Bing Neel Specialist and serves as a Consultant Haematologist & Associate Professor at the University College of London and The National Hospital for Neurology and Neurosurgery in London.

This is a wonderful video and especially relevant for those wondering about whether they might have Bing Neel.


Lymphoma Coalition 2022 Global Patient Survey
Week 7 Update

2021 WMUK Patient-Doctor Summit

Thank you to everyone who has completed the Global Patient Survey (GPS) 2022. The WM response so far has been strong with 778 respondents – but we can’t stop yet. The Lymphoma Coalition’s goal is to understand the current voices and values of WM patients and caregivers – as many as possible from all around the world – so they can be accurately represented in the work they do to improve lymphoma care globally.

Good News! The GPS deadline has now been extended to April 14th. Click the button below to participate.

Calling all Caregivers!
Caregivers International Support Session
Wednesday, April 6th from 1:00PM-3:00PM U.S. ET


Dr. Hannah-Rose Mitchell
Memorial Sloan Kettering Cancer Center

Join Caregivers around the world for a live Zoom meeting presentation and Q&A with Dr. Hannah-Rose Mitchell.

Dr. Mitchell is a clinical health psychologist and Chief Postdoctoral Research Fellow at Memorial Sloan Kettering Cancer Center in the Department of Psychiatry and Behavioral Sciences, where she provides services to families in the Caregivers Clinic. Her research aims to reduce the burden of cancer on the family and to improve patient and family caregiver well-being.

Registration is required for this session. After registering, you will receive a confirmation email containing information about joining the meeting. If you have any questions, please contact

WM Community Corner


Deborah Kelly (center, front row above) participated in The Leukemia & Lymphoma Society Big Climb on March 26, 2022. Deborah and “The B-Team” climbed 70 flights of stairs at the Bank of America in Dallas, Texas in memory of her father. The B-Team raised over $17,000 in support of blood cancer research and patient support. Well Done!

We Need YOUR Voice!

The IWMF wants to hear from the global patient community: “What Having WM Means to Me”.  Contact Jeremy Dictor at to schedule a recording session, and make your voice heard. These video clips will be shared during the 2022 Educational Forum, on our website, and through our social media channels.

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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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