June 12, 2026 - Volume 6, Issue 11 | | Welcome to the WM Weekly: 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 | | Summer Video Series | | Events | | WM Research | | WM Community | | Webinars | | Support | | Living Well with WM | | | Welcome Kim, New Grants Administrator | | | | |
IWMF is pleased to welcome Kim Schwartz as Grants and Contracts Administrator.
Kim brings more than six years of nonprofit grants management experience, including leadership in grantmaking operations and research partnerships.
| | “Kim’s experience, professionalism, and collaborative spirit make her an outstanding addition to our team,” said Delora Senft, President and CEO of IWMF. Learn more about Kim in our Newsroom. | | Introducing IWMF's Ed Forum Videos | |
We’re kicking off our summer video series with four must-watch sessions from the 2026 U.S. and European Educational Forums. Stay tuned for new releases over the coming months. Plus, scroll down for a quiz that tests your WM knowledge!
For a better viewing experience, turn on YouTube subtitles. Depending on your device, here is how you can activate captions:
- On a Computer: Click the gear icon on the video player, select Subtitles/CC, and choose your preferred language or the Auto-Translate option.
- On a Smartphone (Mobile App): Tap the video to bring up the player controls, then tap the CC icon or the three dots in the corner to toggle subtitles on.
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Video 1: Welcome to the 2026 European Educational Forum
This opening video introduces the forum’s central theme of time (“Chronos”) as a way to understand the WM journey.
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- Welcome from IWMF's President and CEO
- ECWM meeting summary
- IWMF’s strategy and impact
- IWMF Impact Awards
| | Main focus: Setting the stage for the forum and framing time as an important concept in WM care and advocacy. | | |
Video 2: Getting to Know Your WM: The Basics - U.S. Educational Forum
This session serves as a foundational overview of WM, especially for newly diagnosed patients and caregivers.
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- Presented by Dr. Peter Forsberg and Dr. Jeffrey Matous
- What is WM?
- How is WM diagnosed?
- Core concepts of disease management
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Main focus: Helping patients understand the basics of the disease and building confidence in early learning.
Test your knowledge of WM with our WM Basics Quiz! We'll be keeping score with more quizzes to come.
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Video 3: Understanding Your Treatment Timeline - European Educational Forum
This fireside chat combines patient experience and expert insight to explore the treatment journey over time.
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- “Watch and wait” phase
- Treatment-free intervals
- Changing treatment landscape, pros and cons of continuous therapies
- Symptoms, side effects, BTK inhibitors, degraders, and clinical trials
- How patients can ask better questions
| | Main focus: Giving patients a practical, real-world understanding of how treatment unfolds over time. | | |
Video 4: Burnout Busters: Overcoming Treatment Burnout - U.S. Educational Forum
This session focuses on the emotional and psychological burden of long-term treatment.
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- Meaning and history of burnout
- How burnout affects people receiving medical care
- Practical ways to reduce treatment fatigue
- Strategies to preserve resilience and quality of life
| | Main focus: Supporting patients and caregivers in managing the mental and emotional challenges of ongoing care. | | |
Coming soon: Stay tuned for interactive "watch parties" where we'll view an Ed Forum session together as a community, and invite the expert back to answer your questions live!
Huge thanks to volunteer Rick Savoy for his help editing our videos over the years!
| | 16th National Conference on Work and Cancer | | IWMF is pleased to partner with Cancer and Careers for the virtual National Conference on Work & Cancer, on Friday, June 26, 2026! This FREE conference will explore the complexities working people face as they try to balance their cancer treatment and recovery with employment. | | | Topics include balancing treatment and work, making disclosure decisions, managing side-effects at work, communicating effectively, looking for work and more. CEs/PDCs available for nurses, social workers, and HR professionals. Register here. | | Introducing the IWMF Event Photo Gallery! | | We’re excited to launch a new online gallery featuring photos from all IWMF events moving forward. Browse hundreds of images of our WM community—including patients, caregivers, healthcare professionals, and IWMF staff. | | The gallery offers a glimpse into the learning, connection, and community that make IWMF events so meaningful. Explore the photos and experience the spirit of the WM community for yourself. | | Kidney Function in Waldenstrom Macroglobulinemia | | |
A recent nationwide Italian study looked at kidney function in people diagnosed with symptomatic Waldenstrom macroglobulinemia (WM) and what it might mean for treatment and outcomes.
The study found that about 1 in 3 patients (29.6%) already had reduced kidney function when they were first diagnosed. (This is higher than the percent of WM patients that had renal dysfunction in a previous US-based report (5.1%) and may reflect, in part, differences in the patient population and when in the course of their disease the patients were studied).
The doctors wanted to understand two main things:
- How often kidney function is affected at the time of diagnosis
- Whether kidney problems change how people do over time or respond to treatment
What did the study find?
- On average, people with reduced kidney function had a higher risk of their disease progressing sooner and a shorter overall survival compared with those with normal kidney function.
- In this study, patients were treated only with standard therapy (not including BTK inhibitors like ibrutinib). Under these conditions, those patients with kidney impairment responded to standard WM treatments just as well as those with normal kidney function.
- People with kidney issues did not experience significantly more side effects, and most were able to stay on standard treatment plans without major dose changes.
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What this means for patients:
- Having kidney dysfunction does not mean treatment won’t work.
- Most patients still respond well to therapy.
- Standard treatments are usually still safe with careful monitoring.
- Even if kidney function is reduced, many people still live for years with good disease control.
In some cases, kidney problems may actually be caused by the WM itself affecting the kidneys. That means that treating the WM can sometimes help stabilize or even improve kidney function.
Kidney dysfunction at diagnosis may signal a higher-risk form of WM, but it is not a barrier to effective treatment. Most patients still respond well, tolerate therapy, and can achieve meaningful disease control.
Resource: British Journal of Haematology, first published March 2026 / Citation: Danesin N, Autore F, Frustaci AM, Favrin G, Cencini E, Noto A, et al. Renal dysfunction in symptomatic Waldenström macroglobulinaemia: A nationwide Italian multicentre study. Br J Haematol. 2026;00:1–10. https://doi.org/10.1111/bjh.70424
This summary was created with some assistance from AI and reviewed by Lee Greenberg, PhD, IWMF Consultant.
Additional note: This study did not include patients with renal dysfunction on BTK inhibitors.
| | BeOne Medicines Establishes Standard for Long-Term Disease Control in CLL with BRUKINSA (Zanubrutinib) | |
We are happy to share a press release from BeOne Medicines, announcing the standard for Long-Term Disease Control in CLL with BRUKINSA 78-Month Data at ASCO 2026. This data represents the longest reported follow-up for a next-generation BTK inhibitor in CLL showing sustained disease control and benefit that extends beyond first-line therapy.
Read the full press release here.
Chronic Lymphocytic Leukemia (CLL) is the most common type of adult blood and bone marrow cancer.
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Although the long-term efficacy and safety data presented are from CLL studies, the foundational role of BTK inhibition and the favorable safety profile of BRUKINSA are likely to be relevant for WM patients.
CLL and WM are different blood cancers, but both arise from B cells, so some of the same treatments - particularly rituximab and BTK inhibitors such as ibrutinib and zanubrutinib (BRUKINSA) - can be effective in both diseases.
In addition, WM patients who have previously received BTK inhibitors may benefit from future access to BTK degraders like tacabrutideg, which is being developed specifically for this population.
| | Suzie Shook's Comeback CAR-T Tale | | |
Suzie’s story is a powerful testament to the impact of clinical research.
In 2025, after being very ill and feeling like she was facing the end of life, Suzie embarked on a "miracle journey" through a CAR-T cell therapy clinical trial at UCSF.
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The results have been transformative: Suzie went from daily medications and weekly labs to being medication-free with minimal monitoring.
On June 7, Suzie and her brother Nick joined 2,500 cyclists for America’s Most Beautiful Bike Ride around Lake Tahoe, raising vital funds for the research that made her trial possible and bringing us closer to a cure for WM.
Suzie’s journey is a reminder that research changes lives—and that every step toward a cure begins with the courage of patients who participate in clinical trials.
| | Big Wins for Author Dana Green | | | | |
WM community member Dana Green has achieved a lifelong dream: publishing a collection of short stories set in Maine.
Adding to this milestone, his story “This World Will Remember Me” has earned a Silver Medal from the 2026 Next Generation Short Story Award committee. The award will be formally announced in July, and the story will be included in the committee’s 2026 anthology.
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Pictured here with his dog Gracie, Dana writes, "I am 72 years old and still “kicking the can” down the road. Now retired from a mid life career in medicine, I dabble and write to uncover the mysteries, marvels, and musings of everyday life."
Please join us in congratulating Dana on this incredible accomplishment! Read his Story of Hope: Dana Green: Healing Powers of Paws-a-tive Companionship
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Ask the Doctor about Lymphoma:
Navigating Relapsed/Refractory Disease
| | This upcoming program from IWMF partner, Lymphoma Research Foundation (LRF), will provide patients with information on what to consider if their lymphoma has returned or is not responding to initial treatment. | | |
On June 17 from 4-6pm ET, join Dr. Elizabeth Brem, MD (University of California, Irvine) to cover these important topics:
- Defining Relapsed/Refractory Lymphoma
- Treatment Options: What is the next step after relapse?
- The Role of Clinical Trials in Relapsed/Refractory Lymphoma Care
- Tips for Communicating with Your Healthcare Team
- Question and Answer Session
Register here for the program.
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Coping with Stress Recording from
Triage Cancer
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Join Julie Larson, LCSW, for a webinar recording brought to you by Triage Cancer.
This session will explore why uncertainty weighs so heavily on mental and emotional well-being, and provide practical strategies to manage stress, worry, and fear. Attendees will gain tools to sharpen self-awareness, cope with intense emotions, and create sustainable practices for resilience.
| | Inaugural Support in Heartland, USA | | |
The newly formed IWMF Heartland Support Group (serving Nebraska and Iowa) officially launched last weekend, holding its inaugural meeting at a local church in Valley, Nebraska. The dedication of this community was on full display: several members drove over three hours to connect in person, while another couple joined virtually via Zoom to participate in the milestone event.
A huge thank you goes out to Janie (pictured center) for her incredible leadership in launching this group, and to a talented grandchild of one of our members for designing the beautiful, custom banner that welcomed everyone.
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Upcoming IWMF Affinity & Support
Group Meetings
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TP53 Affinity Group - June 14 at 6:00pm EDT. Join group leader Jane for a group discussion on information learned about the TP53 gene mutation at IWMF's 2026 Educational Forum. Register to join this new group.
LGBTQ+ Affinity Group - June 18 at 3:00pm EDT. Group leaders Gene and Jane will host a sharing discussion. Email office@iwmf.com to be added to the mailing list.
WM Support Ireland In Person Meeting - June 20 at 10am Irish Standard Time. Bob Perry is hosting a second face-to-face meeting in Ireland this year. Register here
For any questions contact: bob5773@hotmail.co.uk
WM Military Veterans - June 30 at 2:00pm EDT. Join group leader Ray and presenter Bethanie Mills, MPH. Register here for the meeting.
| View our full calendar of events here. | | Need a Second Opinion or Clinical Trial Screening? IWMF Can Help | |
We’re proud to join forces with The National Organization for Rare Disorders (NORD) to strengthen the financial safety net for our global community.
Because WM is a rare disease, obtaining a second opinion from a WM specialist can be crucial in confirming the diagnosis and determining the course of treatment. In 2026 alone, The IWMF Travel & Lodging (T&L) Assistance Program has provided 12 individuals diagnosed with WM, or those being evaluated for the disease, with financial assistance related to second opinion or diagnosis confirmation appointments.
The T&L Program also offers financial assistance for travel related to clinical trial eligibility screening or first clinical trial visit (not being paid for by the trial sponsor) up to the program's established financial limit.
Community members inside AND outside of the US may qualify. Apply today!
For further information or to apply, contact NORD Monday-Friday between 8:30am- 6:00pm ET at 203-308-5902 or via email at IWMFTravel@rarediseases.org
| Funds Open for U.S. Patients | | We've created a brief, anonymous survey to collect more information on how you're using wellness programming and what you value. | | |
Click to Fill out the Wellness Survey
Your feedback will help us continue to bring you the offerings you want, while evolving in the right direction. Thanks so much for taking the time to share your voice!
| | Join Us for June Wellness | | |
Interested in joining IWMF’s global wellness community for patients and care partners?
✔️ Explore the IWMF Wellness Calendar and drop into an upcoming class.
✔️ Sign up to receive everything our Integrative Wellness Program has to offer in our monthly newsletter that comes out at the beginning of each month.
| | Check out the June calendar above - click for the PDF. Each class title takes you to its' respective sign up page! All times listed in Eastern Time (EDT). | | Wellness Questions? Please reach out to our Director of Integrative Wellness and Patient Communications, Ann MacMullan. | | The 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 or visit www.IWMF.com | |
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IWMF, 1449 S Michigan Ave STE 13329 Chicago, IL 60605
info@iwmf.com | 1-941-927-4963 | | | | |
