The Waldenstrom's Weekly

July 19, 2024

Volume 4, Issue 28

Thank you for subscribing to Waldenstrom's Weekly. This summer we are trying something a little different, and we welcome your feedback. Starting this week, and continuing every other week, the Waldenstrom's Weekly will focus on one topic of great importance and interest to our community by providing expanded, in-depth coverage on that topic. On alternate weeks, we will continue our traditional format. As always, we welcome your suggestions and feedback.

Special Patient Registry Edition

UPDATE: 96 WhiMSICAL Registry participants updated their data since last Friday's Waldenstrom's Weekly, and over 20 new participants have joined since the end of May!

WhiMSICAL Registry investigators are gathering important information on the most common treatments. These important data insights will be presented to leading WM experts at the 2024 American Society of Hematology (ASH) conference. So, by participating in this registry, you are helping to answer important research questions in our continued search to improve WM outcomes. 

From Pete DeNardis, IWMF Board Chair:

"WhiMSICAL is the only WM-specific patient data gathering mechanism for all WM patients and caregivers around the world. This online database provides researchers with the opportunity to evaluate signs, symptoms, and treatments for WM on a global scale. WhiMSICAL has enabled organizations in several countries to utilize the analyzed data to petition their health care systems to approve the use of treatments like ibrutinib and zanubrutinib for patients in their respective countries. Let’s all work to make its voice stronger – it only takes a few minutes of your time to help yourself and others dealing with the disease. This is one of the many ways we can continue to work together to “accelerate the cure” – and all it takes is a few clicks on a keyboard."

If you are one of almost 700 patients whose WM experience is shared in WhiMSICAL, please join Pete and update your data HERE by Wednesday July 24th.

Most importantly, please update any changes to your treatment (question 9) and quality of life (questions 20 and 21).

Even just one entry will provide an important activity update, so we urge those who have not visited WhiMSICAL for a while to sign in to see if you have anything to add or change. 

For new participants, please add your voice to the WhiMSICAL Registry by joining CART-Wheel.org HERE.

For Frequently Asked Questions, click HERE. For assistance, email whimsical@iwmf.com.

Together, we can find answers to important questions in WM research as we search for a cure.

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.

Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on "download photos" at the top to view all content. For more information, email info@IWMF.com.