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The Waldenstrom’s Weekly

March 26, 2021

Volume 1, Issue 3

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


Story of Hope
Sara Waits: Ten Lives and Counting

“Who knows where or when this WM journey
will take me next?”

Save The Date
Bing-Neel Syndrome International Support Group
Sunday, May 16th from 3:00PM – 5:00PM U.S. ET


The Bing-Neel International Support Group Meeting will be a chance for patients with the rare syndrome to “meet” one another virtually from across the globe. The meeting will be targeted for WM patients who have Bing-Neel Syndrome or for Bing-Neel care partners.

This specialty topic meeting will include a short panel presentation by several Bing-Neel patients followed by small breakout discussion groups.

You will need to register in advance for this meeting. After registering, you will receive a confirmation email with meeting link information.

NEXT WEEK, Don’t Miss Out!
IWMF Global Educational Webinar
Wednesday, March 31st at 11:30am U.S. ET

Ask the Doctors LIVE:

WM and the COVID Vaccine

Dr. Stephen Ansell & Dr. Jorge Castillo are answering YOUR questions about WM and the COVID vaccine!
ansell castillo

Presenting New and Revised IWMF Publications

The IWMF is excited to announce that we have updated our WM Details Fact Sheet with the latest information on WM, including:
  • causes and risk factors
  • prognosis
  • signs and symptoms of disease
  • common medical tests used for diagnosis and disease monitoring
  • treatments and side effects
  • recent developments
  • survivorship
In addition to our updated WM Details Fact Sheet, the IWMF has also created a new fact sheet on the anti-cancer chemotherapy drug Cyclophosphamide.
The IWMF provides educational publications free of charge – for a full listing of our publications, please click the button below.
IWMF publications

LLS Program: New Treatments in WM featuring
Dr. James Gerson and IWMF Patient Panel

IWMF publications
The Leukemia & Lymphoma Society and the IWMF are partnering again! LLS is pleased to announce their upcoming WM program:
New Treatments in Waldenstrom Macroglobulinemia with Dr. James Gerson of Penn Medicine AND a Fabulous Panel of WM patients & caregivers from the E. PA / S. NJ (Philly) Support Group! Bring your questions for a lively Q&A.
Wednesday April 7th, 2021 from 2:00pm – 4:00pm U.S. ET
About the Program:
This program will provide participants with a better understanding about the new treatments available for WM, while also discussing current treatments, side effects, and management of the disease.

LLS Program: WM Update featuring
Dr. Steven Treon & Dr. Daren Grosman
Saturday, April 10, 2021 from 10:00AM – 12:00PM U.S. ET

IWMF publications
About the Program:
Please join the LLS South Florida Region and Memorial Cancer Institute for a free virtual education program for patients and their families. Presenters will discuss the latest advances in WM from diagnosis to living with the disease.
Participants will learn about the newest treatment options, signs and symptoms, clinical trials, and managing side effects. The impact of COVID-19 and the vaccine will be discussed. The presenters will also review key questions to discuss with your providers, quality of life and the future of Waldenstrom’s treatment.


Participate in LLS COVID-19 Antibody
Research Study (U.S. Patients)

The Leukemia & Lymphoma Society (LLS) is undertaking a unique research study focusing on the antibody response among blood cancer patients in the United States. Participating is easy, and the end result will be a large-scale collection of data from vaccinated blood cancer patients.
The LLS needs your help as “citizen scientists” to contribute to this exciting research initiative. The LLS’s National Patient Registry is currently focused on answering important questions about blood cancer patients and the COVID-19 vaccines.
The research study will monitor antibody production and response resulting from COVID-19 vaccination. This will involve having your blood drawn at a local LabCorp service center. The number of blood tests asked for will depend on when you have, or are scheduled to, receive your vaccine.
If you are interested in joining please visit the LLS Registry Website and click “Join Today” to provide your consent to join this timely research study. After they receive your consent, they will ask a few questions about your COVID-19 vaccination status. The LLS will provide you with a lab request slip and the LabCorp website for you to schedule your appointment at a time and place most convenient for you.
Together, the WM community and the LLS will change the future of blood cancer care.
If you have any questions, please reply via email to or call (844)-696-7228.

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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