The Waldenstrom's Weekly

July 7, 2023

Volume 3, Issue 24

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 Announcements -

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!

IWMF & NORD Financial Assistance Program EXPANSION!

The IWMF is EXPANDING our first financial assistance program to travel related to clinical trial eligibility in partnership with The National Organization for Rare Disorders (NORD)!



The IWMF Travel & Lodging (T&L) Assistance Program has been providing individuals diagnosed with WM, or those being evaluated for the disease, with financial assistance related to second opinion or diagnosis confirmation appointments. With WM being a rare disease, having a second opinion with a WM specialist can be critical to confirm diagnosis and course of treatment.

TODAY, we are announcing that the T&L Program is being expanded to travel related to clinical trial eligibility screening or first clinical trial visit (not being paid for by trial sponsor) up to the program's established financial limit.

Community members inside AND outside of the U.S. may qualify, apply today!

CLICK HERE for the REVISED NORD flyer

For further information or to apply for this program, contact NORD M-F between 8:30am - 6:00PM EDT:

203.308.5902 or IWMFTravel@rarediseases.org

Please note that funding is limited. If you would like to contribute to the IWMF and our T&L Fund, please contact Annette Preston, IWMF Director of Donor Engagement, at apreston@iwmf.com.

This is a special opportunity to help other WM patients!

*NEW* Patient Perspective YouTube Video Series

From Sharon Piotrowski, WM Community Member:

"I am Sharon Piotrowski and I have WM. I hope you will watch the first edition of the WM Patient Perspective Video Series, which focuses on how one found out they had this rare cancer.

The IWMF's goal for this series is to provide patients and caregivers views from people who are living with WM. We have great support groups whether it is in your local region, on IWMF CONNECT, or in the WM Facebook patient group. The video series expands on topics that are talked about in the support groups and brings those topics to life with videos. We all know how important our WM expert doctor videos are, so I thought a patient perspective video series could be equally important in enhancing how to live with WM. 

More videos are to come covering, but not limited to, caregivers roles, treatments and the varying symptoms WM patients have.

Participating in the series doesn’t require much of your time and all you need to have is a computer to record from. If you are interested in participating and want to learn more, please email me at wmpatientperspectivevideos@gmail.com.

I want to thank Kathy W., Margaret L., Adam S., and Charles S., for giving their time to the first installment of the Patient Perspectives topic, One’s Journey to WM. On behalf of this first group, we hope you will learn more about our rare cancer and how best to live with it. Thank you."

A BIG THANK YOU to Sharon for spearheading this initiative!

-Research -

A Tribute to Dr. Steven Treon -

25 Years at Dana-Farber Cancer Institute!

Dr. Steven Treon has been at the forefront of treatment and research at Dana-Farber Cancer Institute for 25 years this month, and our WM Weekly readers can learn about his history there with an article tribute from Phil Brodsky:

When I joined the Bing Center as an experienced "fifty-something" engineer, after working in high tech for 30 years, I thought I had seen my share of smart & capable people. But Steve is on a whole 'nother level. To paraphrase one of his colleagues at one of the many scientific meetings Steve helped to organize, "Nobody, other than Jan Waldenstrom himself, has done more to advance the scientific knowledge of Waldenstrom's Macroglobulinemia than Dr. Steven Treon." I am proud, and humbled, to consider Steve a colleague and friend. And I congratulate him for his 25 years of service to Dana-Farber, and to the cancer community in general, and lastly (maybe most importantly), for being such a wonderful human being.

Pete DeNardis (IWMF Board Chair) commented on the article, stating "Dr. Treon's focus and groundbreaking work in Waldenstrom's macroglobulinemia has, from the very beginning, significantly elevated the understanding of our disease and enhanced the treatments available for patients around the world. His devotion to our disease has led to improved treatments and quality of life for those dealing with our very rare form of cancer. The global WM community owes a great debt of gratitude for his commitment to us over the past 25 years!"

Read the full article HERE.

-Education -

New Infographics Available for Patients and Healthcare Practitioners from Lymphoma Hub!

From the Lymphoma Hub:

"Waldenstrom’s Macroglobulinemia (WM) is a rare hematological malignancy and many healthcare professionals (HCPs) may only treat a handful of patients with the condition throughout their careers. There is a lack of education about the disease and its treatment in patients with WM. Therefore, HCPs treating patients with WM face challenges in communicating key information about the disease and treatment options to patients.

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) developed a reference guide to assist communication between HCPs and patients with WM to address this unmet need. As part of our ongoing partnership with the IWMF, the Lymphoma Hub is happy to present a concise quick reference guide to assist time-pressed HCPs treating patients with WM."

You can check out the infographics below geared towards educating both patients and HCPs. Feel free to download and share with your local HCP!

International Young WM Support Group Meeting

Saturday, July 22nd at 12:00PM U.S. Eastern Time

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 mpostek@iwmf.com.

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 info@IWMF.com or visit www.IWMF.com