July 10, 2026 - Volume 6, Issue 13 | | Welcome to the WM Digest: a place where you can find vital information and education about Waldenstrom macroglobulinemia (WM), hear the latest WM research updates, meet WM community members who share their stories, and get diverse support for managing WM. | | | | IWMF's mission is to support and educate everyone affected by Waldenstrom macroglobulinemia (WM) to improve patient outcomes while advancing the search for a cure. | | | Special News | | WM Research | | Summer Video Series | | Events/Webinars | | WM Community | | Support | | Living Well with WM | | | Our Newsletter's New Name | | We have a winner! In our last issue, we asked you to cast your vote on a new name for our fortnightly newsletter. There was a clear winner: The Waldenstrom's Digest, or WM Digest. | | |
We also received a few emails with other ideas, and the suggestion to use "Waldenstrom," not "Waldenstrom's." We agree that the disease name going forward should be Waldenstrom instead of Waldenstrom’s.
Thank you so much to all who wrote in and voted on the change, which is now official: The Waldenstrom Digest / WM Digest.
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July's issue of our quarterly magazine The Torch is now available online: read it here.
In this issue, you can read about a $3 million pledge from the Bliss family, the largest single gift to IWMF, going toward research into cellular therapies for WM.
Plus, learn about an exciting addition to the IWWM (International Workshop on Waldenström's Macroglobulinemia) in October - just for patients and patient advocates!
| | Bittersweet News: IWMF Staff Update | | |
One of our longest-serving staff members, Michelle (Shelly) Postek, IWMF Director of Community Engagement & Support, will be leaving IWMF this week to pursue an in-person opportunity.
Shelly has provided consistent, empathetic support to WM patients and caregivers over the last seven-plus years. She has been instrumental in growing our partnerships with other organizations to help widen resources for those affected by WM.
| | Michelle "Shelly" Postek, MSW, started with IWMF in 2019. | | |
With her steady hand, eagle eyes, and warm heart, she's grown the entire garden of support, education, and resources that IWMF offers, including support groups, LIFELINE, Travel & Lodging Assistance Program, E-News, Integrative Wellness Program, and so much more. Often the first point of contact for WM patients and caregivers, Shelly has changed the course of many lives with her guidance.
"It has been an honor and a wonderful experience working at IWMF over the past seven and a half years. I look forward to watching all the incredible progress being made to positively impact the lives of those affected by WM, and I will forever cherish the relationships and connections I have made at this fabulous foundation!" - Shelly Postek
We are incredibly grateful to Shelly for her years of dedication, and wish her abundance and good fortune on her new path.
| | Hope at EHA 2026: Dr. Dima El-Sharkawi | At the European Hematology Conference (EHA) in Stockholm, Dr. Dima El-Sharkawi of the Royal Marsden Hospital shared an encouraging outlook on the future of Waldenstrom macroglobulinemia (WM) treatment. The latest research points to a brighter future for people living with WM, with continued advances offering new hope and better quality of life. | | Peter Bing, MD: A Lasting Legacy in Waldenstrom Macroglobulinemia | | |
Peter Bing, MD, a nationally renowned public health expert and philanthropist, profoundly shaped the field of Waldenstrom macroglobulinemia (WM).
Dr. Bing, who passed away on June 10, 2026, believed deeply in the power of research to change lives.
His support of Dana-Farber Cancer Institute helped establish the Bing Center for Waldenström’s Macroglobulinemia, now the world’s largest referral center dedicated to WM. Founded in 1999 and named in his honor in 2005, the Center, led by Dr. Steven Treon, has advanced WM research through discoveries including familial WM and the MYD88 gene mutation, which helped pave the way for targeted therapies.
| | Dr. Steven Treon and Dr. Peter S. Bing in 2008, just three years before Treon and his team announced the groundbreaking identification of the gene mutation MYD88. | | |
Dr. Bing also helped foster a global WM community committed to collaboration, innovation, and patient care. In recognition of his contributions, the International Workshop on Waldenström’s Macroglobulinemia (IWWM) established the Peter Bing Humanitarian Award.
His legacy continues through the Bing Center’s research, discoveries, and hope for patients around the world.
Read more from the Bing Center.
Note: The name of Dr. Bing is unrelated to Bing-Neel sydrome.
| | Miss the Ed Forum Sessions? | | |
Explore more videos from our signature educational events in both North America and Europe.
This group of videos highlights some of the complications that can arise from a WM diagnosis, such as: peripheral neuropathy, cold agglutinin disease, cryoglobulinemia, amyloidosis, and Bing-Neel syndrome. More videos to come!
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Complication Conversation: Addressing WM's Ripple Effects with Dr. Stephen Ansell - Watch Here. Take the WM Complications Conversation Quiz.
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When Time Complicates the Picture 1: Peripheral Neuropathy, Cold Agglutinin, Cryoglobulinemia with Prof. Monique Minnema - Watch Here.
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When Time Complicates the Picture 2: Amyloidosis & Bing-Neel Syndrome with Dr. Stathis Kastritis - Watch Here.
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Nerve Center: Understanding + Managing Peripheral Neuropathy with Prof. Shirley D'Sa - Watch Here.
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Skin Deep: Understanding Skin Issues in Waldenstrom with Kate Mimken, RN - Watch Here.
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Empowered by AI:
"Watch Party" with Live Q&A
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Wednesday, July 15 at 1pm ET on Zoom / Register Now
Still have questions about using AI? Join us for our first "watch party" as we reexamine important sessions from our educational forums.
Empowered by AI: Navigating Blood Cancer Care through Technology with Lisa Porat and Anand Reddi
In this session, industry experts explore the intersection of artificial intelligence and patient empowerment. It's designed for patients, caregivers, health care providers and advocates navigating the complexities of blood cancer care.
Huge thanks to Lisa Marquette Porat, BeOne Director of North America Patient Partnerships, and Anand Reddi, BeOne Global Head of Direct-to-Customer Innovation and Digital Health, for coming back to answer more questions in our "watch party" webinar format!
Stick around for a live question and answer period - you can submit your questions here or type questions into the chat after the session.
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Check out IWMF's Event Calendar.
Explore the IWMF Events Photo Gallery to experience the spirit of the WM community for yourself.
| | Waldenstrom Connections in Florida | | On June 24, IWMF’s Southwest Florida Support Group met in Bonita Springs at the local public library. 13 attendees gathered to embrace new members, share WM experiences, and discuss treatment insights. | The Sarasota, Florida WM Support Group met on July 7 at Speaks Clam Bar in Bradenton, Florida. Fourteen community members gathered for lunch and lively discussion. With attendees ranging from the newly diagnosed to those twenty years post-diagnosis, the group shared a wealth of wisdom, with a special focus on the vital importance of having a WM specialist on your care team. | | For more on how to find support near you, scroll down. | | |
LGBTQ+ Affinity Group - July 18 at 1pm EDT. Group leaders Gene and Jane will host a sharing discussion. Email office@iwmf.com to be added to the mailing list.
Young WM (pre-retirement age) Affinity Group - July 25 at 12pm EDT. Email office@iwmf.com to be added to the mailing list.
| For regional support groups, visit our Events Calendar. | |
Funds Open for U.S. Patients | | |
Need help covering the costs of WM treatment? The patient advocacy organizations listed below offer financial assistance programs to help with copays, premiums, and other out-of-pocket expenses:
| | Explore Ancient Wellness Practices | | Join Rami Rones on Thursday, July 23 at 2pm ET to explore ancient mind-body practices to help manage symptoms like fatigue and peripheral neuropathy. Sign up here. | | Ramel "Rami" Rones is a champion martial artist and health expert who specializes in using Qigong, T'ai Chi, and meditation to support health and well-being. He has served as a scientific consultant on mind-body therapies at Dana-Farber Cancer Institute, Harvard Medical School, and other leading Boston hospitals, and has co-authored numerous scientific publications. | | Wellness Questions? Please reach out to our Director of Integrative Wellness and Patient Communications, Ann MacMullan. | | |
This e-newsletter is a free service to WM community members to share WM related news and events.
Scam / Phishing Alert: Be skeptical of unexpected emails, texts, or phone calls—even if they appear to come from a trusted organization.
Remember: IWMF will never ask for your password, banking information, or payment through unsolicited emails or text messages. If you receive a suspicious message claiming to be from the IWMF, contact us directly before taking any action.
For more information, email info@IWMF.com or visit www.IWMF.com
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Please note our new mailing address:
IWMF, 1449 S Michigan Ave STE 13329 Chicago, IL 60605
info@iwmf.com | 1-941-927-4963 | | | | |
