The Waldenstrom's Weekly

July 21, 2023

Volume 3, Issue 26

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 Announcements -

Register Today!

Join the IWMF and WMUK for the First Ever European Patient Forum on Saturday, October 21st

Hear from experts, meet patients and families and talk to healthcare professionals at the FIRST EVER European Patient Forum co-hosted by IWMF and WMUK!

We’ll be live in Birmingham (United Kingdom) and Amsterdam (The Netherlands) covering everything you want to know about living with WM.

Our joint sessions will be streamed between our two locations, and will conclude with an ‘Ask the Healthcare Professional’ panel where you may ask your questions LIVE to a panel of nurses, doctors and allied healthcare professionals from across Europe.

The event is an exciting first-of-its-kind for both our organisations, combining our resources to provide even MORE expert advice and personal support for people affected by WM across Europe.

Click HERE for more information, agenda & registration.

We hope you can join us!


We are thrilled to report that we have SEVEN Walks scheduled throughout the month of September!

  1. Marla Chao & the Los Angeles Area, CA Support Group
  2. Julianne Flora-Tostado & the San Diego Area, CA Support Group
  3. Karen Fiorello & Lata Israni – Mission Bay, CA
  4. Eunice Quast, Kate Beverley, Susan Hamblin & the Minnesota/W. Wisconsin Support Group
  5. Shelly Postek, Sharon Piotrowski & The Sarasota, FL Area Support Group
  6. Lisa Wise, Andrea Bensusan & The E. PA/S. NJ (Philly) Support Group 
  7. Paul Kitchen, Rothesay, New Brunswick, Canada

Would you like to hop on the Walk for WM wagon and host a September walk in your local area? Contact Annette Preston at [email protected] for more information and she can help get the process started, there’s still time to plan! Hosting a walk is a great way to gather our WM community members and raise funds and awareness about WM! Don’t want to walk? How about hosting a bike ride, rollerblade, run, knitting session, Mexican train game, dart or horseshoe tournament in the name of WM? The possibilities are endless!

-Education -

From the Leukemia & Lymphoma Society:

New Podcast on Beneficial Medicare Changes

From the Leukemia & Lymphoma Society (LLS) for U.S. Patients:

Be Informed: Beneficial Medicare Changes

Cancer-related costs can be an overwhelming burden for patients on Medicare. However, new changes in Medicare will directly impact cancer patients and ease this financial burden.

In this episode, Brian Connell, the Vice President of Federal Affairs at LLS, discusses the new changes in Medicare for 2024 and 2025, as a result of the recent Inflation Reduction Act. Medicare recipients will benefit from these important changes, making cancer treatment more affordable and accessible.

Listen to the Podcast Here

Upcoming Triage Cancer Webinar:

Engaging in Self-Advocacy

July 26, 2023

1:00PM - 2:30PM U.S. Eastern Time

This webinar will empower self-advocates! Learn practical tips for collecting medical records, talking with health care teams, navigating work and cancer, applying for benefits, filing appeals, identifying inaccurate online information, and more!

Register Here
- Support -

TODAY! Sound Meditation for WM

2:00PM - 2:45PM U.S. ET

Contact Shelly for the Zoom link at [email protected].

TOMORROW at Noon U.S. Eastern Time

International Young WM Support Group

TOMORROW, The International Young WM Support Group will be having a meeting for patients and caregivers under the age of 50.

Attendees will join Co-Leaders Ryan, Deborah and Jason on Zoom for a caring and sharing session, which will last approximately one hour.

Saturday, July 22nd, 2023

12:00 Noon - 1:00PM U.S. ET


To join the mailing list for this group, contact Shelly at [email protected].

From Cancer Support Community:

Your Guide for Talking Mental Health with Your Team

From Cancer Support Community (CSC):

It’s important to care for your mental health following a cancer diagnosis. This discussion tool will help guide conversations with your care team about mental health, how mental health may change after a cancer diagnosis, and how to connect to mental health resources and support for you and your caregiver. 

Click Here for the Guide

From The Leukemia & Lymphoma Society:

New Financial Assistance Online Portal Launched

The Leukemia & Lymphoma Society (LLS) is excited to announce that their new online portal for all financial assistance programs, is now live.

The new portal provides a one-stop-shop where users can access the Co-Pay Assistance Program and other LLS financial assistance programs in one place.

How to access the new portal:

  • If you are registered on both the Co-Pay and Patient Financial Assistance Portals: Use your existing Co-Pay log-in to access the new portal.
  • If you are registered only on the Patient Financial Assistance Portal: Use your existing Patient Financial Assistance log-in to access the new portal.

What changed:

  • Users access all the financial assistance programs in one portal
  • Applicants who complete a few pre-screening questions will see a list of open financial assistance programs they may qualify for. 
  • Contact information for those who have already submitted an application will be saved. When a new application is initiated, the saved contact information will prepopulate for a more convenient user experience.


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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