The Waldenstrom's Weekly

June 30, 2023

Volume 3, Issue 23

The IWMF mission statement is to support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) to improve patient outcomes while advancing the search for a cure.

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-Special Announcement -

The July 2023 IWMF Torch (issue 24.3)

is Now Available!


It never fails to amaze me how quickly time flies. Once again, a new Torch is about to arrive on your computer or in your mailbox!

If you were unable to attend the Ed Forum in St. Louis, virtually or in person, our cover story and accompanying short articles will have you feeling like you attended. While you can watch all the presentation videos online, Pete DeNardis has written about what it was like to enjoy each other’s company for the first time in years. Let’s hope that next year we’ll also be able to get together for the Ed Forum in the beautiful Pacific Northwest.

We continue our coverage on living well with WM, this time with an emphasis on financial assistance and the resources that are available to the WM community. Then, along with learning about why grapefruit can be a problem with drug interactions, we can also better understand, thanks to Susanne Ȍhrn, how patients in the Nordic countries cope with their WM and the medical system.

Something for everyone! Meanwhile, start planning your Walk for Waldenstrom’s, anywhere in the world, anytime in September. Happy walking…and reading!

Shirley Ganse

Editor, IWMF Torch

Read the Latest Issue Here!

-Education -

Patient Access Network Foundation:

New Educational Hub

From the Patient Access Network (PAN) Foundation:

"Copay accumulator and maximizer programs have only been around for about five years, but in that time they have resulted in significant financial burdens for people with commercial insurance who simply needed help paying for their prescriptions. We also have a growing concern about alternative funding programs.


We explain all three programs in our new educational hub, including ways you can help PAN build awareness and ask Congress to ban them."

Check out PAN's new educational page HERE.

Lymphoma Research Foundation: Save the Date!

- Support -

New Support Resource for Bing Neel Syndrome

This month, the IWMF LIFELINE Volunteer Leaders for Bing Neel initiated a private Facebook group for those affected by Bing Neel Syndrome (BNS). The group currently has 55 members from all around the world. If you or a loved one has BNS and are seeking support, you can join the group HERE.

Throughout the year, the BNS Leaders offer opportunities for patient connections by coordinating presentations from experts and facilitating group sharing discussions. If you have BNS and are not on Facebook, you may get on the group mailing list for upcoming programming by contacting the leaders below:

WM Community Corner

Last weekend, the WMFC Atlantic Support Group enjoyed a picnic and learning session at the Saint Mary's Lawn Bowls Club in Halifax, Nova Scotia, Canada. To read more about co-leader Ron Ternoway's love of lawn bowling, check out his April IWMF Torch article on page 21 HERE.

The IWMF website calendar is updated regularly with upcoming IWMF Support & Specialty Topic Groups, International Affiliate Meetings, and IWMF Partner Meetings. Check out what's on the horizon HERE!

The information about this clinical trial is intended to be helpful and educational, but it does not constitute an endorsement by the IWMF and is not meant to be a substitute for professional medical advice. The IWMF strongly encourages discussions with their health care professionals about specific medical conditions, side effects, and treatments.  

Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on downloading photos at the top to view all content. For more information, email [email protected] or visit

IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | [email protected] | 1-941-927-4963
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