The Waldenstrom's Weekly

January 5, 2023

Volume 4, Issue 1

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.

- Special Announcement -

The First 2024 Issue of the IWMF Torch is HERE!

January 5, 2024

Hello again!

It’s hard to believe another year has passed, but as we head into 2024, we can be very thankful for how much the IWMF does to support and educate those of us afflicted with WM. I have benefitted greatly, as I’m sure many of you have as well; for me, I find donating time and money is the least I can do to help continue its work.

My donation of time includes doing the Torch, and it’s rewarding to have WM expert doctors also donate their time to help educate us. In this issue we present the second of Dr. Jonas Paludo’s articles on treatment and goals of treatment for WM. Practical and useful information is always something we need, no matter how long we’ve been dealing with WM.

The Torch is increasing international coverage, and it’s exciting to hear about the first international Ed Forum in Europe, among other international reports. As for some big news in the US: Dr. Jorge Castillo discusses the ongoing development of the new WM-NET program to increase interest and participation of institutions in WM clinical trials. We can all support that effort to get more people involved in the testing of new drugs.

You will find many more articles to pique your interest, but meanwhile, join us in celebrating 2024 and the opportunities it may present. May we all work toward peace and good will around the world.

Best wishes for health and happiness!

Shirley Ganse

Editor, IWMF Torch

- IWMF Educational Forum -

Come and Immerse, Explore, and Soar at the 29^th Annual IWMF Ed Forum. Preview the dynamic agenda of topics, workshops, and expert faculty to help you stay on top of the latest news regarding current and upcoming treatments for WM, and how best to live with the disease.

Your $250 registration fee includes access to all live general sessions, networking breakouts, daily breakfasts, Friday and Saturday lunch, refreshment breaks, and the welcome reception/dinner on Friday.



Register early and sign up for your preferred breakouts, as space is limited and available on a first-come, first-served basis. 

IWMF Alaska Cruise - Deadline is January 31st!

Are you dreaming of an unforgettable adventure in Alaska? Now is the time to join fellow WM community members and make it a reality! This offer is only available until January 31st, so why wait? Book now!

- Education -

IWMF Wellness Educate & Empower Series 

Do you experience pins and needles, pain, numbness or weakness in your feet, legs, or hands because of peripheral neuropathy? Join exercise physiologist Nancy Campbell to learn how simple exercises can help manage the challenges of peripheral neuropathy (PN). We will discuss different treatment strategies such as improving blood flow and movement, and learn how to incorporate these into our daily lives. Come ready to both learn and do – wear comfortable clothing that you can move in and bring water to stay hydrated. Register now to join our Zoom Educate and Empower monthly wellness webinar!

Leukemia & Lymphoma Society

Florida Blood Cancer Conference in Fort Lauderdale

The Leukemia & Lymphoma Society (LLS) will have a breakout session on WM with TWO speakers- including Dr. Steven Treon from Dana-Farber Cancer Institute!

Strength Training with Sharon:

TODAY at 1:00PM EST

Strength training can help us age more gracefully by improving mobility and bone density, maintaining or increasing muscle mass, and decreasing the risk of falling. Join ACE Certified Personal Trainer Sharon Piotrowski, who is also a WM community member, for a strength training workout for all fitness levels. We’ll be exercising with a pre-recorded video and then sticking around to support each other. Optional: have small hand weights or household items like water bottles handy. Email [email protected] to receive the Zoom invitation and follow-up recording link.

Chair Yoga - Tuesday, January 9th at 2:00PM ET

Ann Grace is traveling to Florida to bring you a little slice of serenity! This holistic self-care practice is tailored to those affected by Waldenstrom’s, and is appropriate for all levels of mobility. Join us on Jan. 9th at 2pm EST for a gentle, inclusive yoga practice to stay balanced in mind, body, and spirit. Stick around to connect with others who share your rare diagnosis after class (optional.) Reach out to Ann if you’d like the Zoom invite or recording. 

Young WM Support Group Meeting

January 20th at 12:00 Noon U.S. Eastern Time

The International Young WM Support Group will be having a meeting this month 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, January 20th

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

To join the mailing list for this group, contact Michelle:  [email protected]

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 www.IWMF.com