May 15, 2026 - Volume 6, Issue 9 | | 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. | | | | The IWMF mission statement is to support and educate everyone affected by Waldenstrom macroglobulinemia (WM) to improve patient outcomes while advancing the search for a cure. | | | Special News | | Events | | WM Research | | WM Community | | Webinars | | Support | | Living Well with WM | | | | | |
"The IWMF Wellness program has changed my life. When you live with an incurable but manageable cancer it is so comforting and impactful to know that you are part of a national and international network of people living with WM.
I have learned so much about my WM since this program’s inception." -Wellness Community Participant
| | To celebrate this milestone, the entire WM community is invited to a special Wellness Community Party on Monday, May 18 at 2 pm ET. Whether participating for years or discovering the community for the first time, all are warmly welcomed to celebrate five years of IWMF wellness. | | Photos captured from wellness sessions at the U.S. Ed Forum in Columbus, Ohio. | | Athens 2026: A Global Gathering for WM | Global Community Back Row: Susanne Öhrn, Jukka Sneck, Arnd Karnatz, Michael Bentley, Bob Perry / Front Row: Hannah Mobarak, Jeannette Quiroz Gomez, Delora Senft, Gloria McNeill, and Claudia Bedogni | |
On April 24, we hosted our 4th Annual European Educational Forum in Athens, Greece, bringing together the international WM community in one place to learn from and connect with one another.
Attendees traveled from 15 countries, including Greece, Germany, the UK, the USA, France, Denmark, Switzerland, Spain, Türkiye, Sweden, Finland, Italy, the Netherlands, Canada, and Chile, making this our most internationally diverse European Educational Forum to date.
The meeting brought together a wide range of perspectives and experiences from across the globe, united by a shared commitment to supporting people living with WM.
To find out more, including details on 2027's European Educational forum: Read more in the IWMF Newsroom
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Inside the U.S. Ed Forum:
A Weekend of Learning, Connection & Hope
| What an incredible and energizing weekend at the IWMF U.S. Educational Forum! From unpacking complex complications and navigating treatment pathways to heartfelt conversations about mental health and the promise of emerging therapies and clinical trials, the weekend was filled with learning, connection, and hope for the future. Enjoy these stats, reflections, and memorable quotes from attendees and physicians capturing the spirit of the weekend. | The Next Frontier in WM: Drs. Steven Treon-Moderator, Tarek Mouhieddine, Zachary Hunter, Maria Guerrero, Patrizia Mondello | "The most valuable aspects of the Ed Forum for me: To be able to listen to the "who is who" in WM. To get the newest information about the disease and how to treat it. To be part of a huge community, some sort of a family, even from afar." -Attendee | |
Fun Stats:
- We had 391 total attendees, 217 in person and 174 virtual.
- You came from United States, Canada, New Zealand, Germany, Mexico, and the Netherlands.
- Our most viewed live session: The Next Frontier for WM.
- Our most watched video: Ask the Doctors.
| | Long-time Ed Forum Attendees: Mary and Don Brown, Pete DeNardis, Shirley Ganse, Tom and Charlene Shyver | | "Everyone was so friendly. Having a chance to meet and talk with other patients, doctors, researchers, and IWMF staff and sponsors was important not only from an informational standpoint but also for mental and emotional support." -Attendee | | Dr. Yazeed Sawalha connecting with a WM patient and caregiver after his session on Navigating Initial Treatment: Options for WM Patients New to Therapy | "I am better prepared for the office visit this week with my doctor. I’m at a higher level of understanding about treatment options and the important questions to ask. So valuable!" -Attendee | | Ask The Doctors Panel - Drs. Yazeed Sawalha, Jorge Castillo, Christian Buske, Stephen Ansell, Shirley D'Sa, Pete Forsberg | | |
In the final session of the weekend, and perhaps the most well-loved, participants got a chance to "Ask the Doctors," moderated by Dr. Steven Treon.
The final question, and a great note to end our conference on, was "What is your message of hope for WM patients?"
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"I think for me the biggest source of hope is the other people involved.
We have a wonderful WM community of doctors and patients and I think it always warms my heart when we have these sort of gatherings; we had one in Athens recently.
It's just the working together that for me is the most hopeful thing." - Prof. Shirley D’Sa
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"I've seen the median overall survival doubling over the last 10 years, the number of people dying from Waldenstrom's decreasing dramatically, five or six new treatments in the last 12 years for Waldenstrom's already approved and available for patients.
I think survival will continue improving, and the number of options will increase based on trials that we have seen and the future trials being planned. So there are so many reasons I believe to be very optimistic." - Dr. Jorge Castillo
| | “I don't think in the 30 plus years that I've been working in the Waldenstrom's field I've been more optimistic about finding a cure for this disease. The IWMF has been behind all these innovations and we're so grateful to you for being able to provide the support that's going to keep us going and get us to a cure.” - Dr. Steven Treon | | Dr. Jeff Matous shakes hands with a satisfied WM community member | | |
"Over the years, I have learned so much about this disease and I am so grateful for the wonderful doctors, staff, researchers who are dedicated to finding a cure for WM. I always come away from the Forums with hopefulness for all of us and the future for our children." -Attendee
A huge thanks goes out to our sponsors, speakers, attendees, and volunteers! It takes all of us—patients, caregivers, clinicians, researchers, partners, and staff—to make this journey meaningful and keep the momentum going. Here’s to continued progress, deeper connection, and a future filled with hope for everyone affected by Waldenstrom macroglobulinemia.
Save the date! Next year's U.S. Educational Forum will be held at the Renaissance Dallas Hotel in Dallas, TX, from September 10-12, 2027.
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Want to watch all of the U.S. Ed Forum sessions? The unofficial recordings are available in EventMobi to our in-person and virtual attendees through this month. To view the recordings now, log into EventMobi, either online or in the mobile app. Go to the agenda and click on any "Live Stream" session.
We will review all recordings and make appropriate edits for official release to our YouTube channel in June.
If you haven't already, please share your thoughts about the Ed Forum experience by filling out this Attendee Feedback Form
| | Iopofosine I-131 Shows Promise | | |
Long-term follow-up data from the phase 2b CLOVER WaM trial showed that the targeted radiotherapy Iopofosine I-131 (CLR 131) produced durable responses in patients with relapsed or refractory Waldenstrom macroglobulinemia, including those whose disease no longer responded to BTK inhibitors.
In the study, 61.8% of patients achieved a major response and 83.6% responded overall, with responses lasting a median of 17.8 months and progression-free survival ranging from about 13.5 to 15.9 months.
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The treatment, given as four short infusions, also demonstrated a manageable safety profile, with low blood cell counts being the most common side effect.
“The depth, durability, and consistency of responses observed across both the total population and BTK inhibitor–treated subsets underscore iopofosine I 131’s potential as a meaningful new treatment option,” said Jarrod Longcor, chief operating officer of Cellectar Biosciences.
The FDA previously granted the therapy Breakthrough Therapy designation for relapsed/refractory WM.
Resource: OncLive, May 5, 2026
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IWMF Torch Correspondent Shares His Story with Patient Power
| Arthur Brewer with family in Paris | |
“WM may now be part of my life, but it does not define it.”
When Arthur Brewer went in for a routine physical in 2019, cancer was the furthest thing from his mind. Today, he is an IWMF Torch features correspondent, an active member of our Support Group community, and an avid world traveler. From managing Watch & Wait to navigating treatment as a person of color, Arthur shares his journey from diagnosis to living a full, vibrant life.
Read Arthur’s inspiring story on Patient Power's website.
| "Remarkably Bright" WM Friend | | The cast of Remarkably Bright Creatures: Sally Field, Lewis Pullman, Beth Grant and Kathy Baker | | |
Have you seen it yet? Remarkably Bright Creatures, the Netflix adaptation of the bestselling book by Shelby Van Pelt, is a heartfelt story about grief, loneliness, and unexpected connection, starring Sally Field.
The film also features our very own WM community member Beth Grant as Barb Vanderhoof, part of Tova’s quirky knitting group, “The Knit-Wits.”
Known for bringing humor and heart to every role, Beth has appeared in beloved films and shows including No Country for Old Men, Rain Man, The Mindy Project, Little Miss Sunshine, and many more.
| | The ever-luminous Beth Grant, WM friend | | |
Beth is also a familiar face in many IWMF wellness classes, where she shares her warmth and authenticity with our community. Diagnosed with WM in 2018, she has been a loyal supporter of IWMF and a sparkling addition to the WM wellness community.
"The IWMF wellness community has genuinely changed my life. This is LIVING with Waldenstrom’s!” -Beth Grant
| | Stay tuned for a feature on Beth in an upcoming issue of The Torch. | |
Volunteer Accepts Award with Grace | | Susanne Öhrn of WM Scandinavia recently accepted her IWMF 2026 Judith May Volunteer of the Year Impact Award, embodying the very best of volunteerism—grace, generosity, and heart. | | |
"I'm not a doctor, I'm not a researcher. I'm just a patient among others. And maybe that is exactly why this community exists. Because sometimes, what we need most is someone who truly understands, who can say 'I've been there. You are not alone.'"
Through nearly a decade of dedication, Susanne's leadership has transformed WM Scandinavia—growing the community to 675 members and creating meaningful connection across borders through virtual gatherings, in-person fika support, and tireless advocacy for multilingual access. Her translation work and global engagement have strengthened the entire WM community.
Find out more about volunteering for IWMF on our website at IWMF.com.
| | Coping with Stress and Uncertainty | | We are partnering with Triage Cancer to bring you this FREE webinar on May 27 at 1:00pm EDT focused on coping with stress and uncertainty with Julie Larson, LCSW. | | |
Living with a serious health condition—or caring for someone who is—can feel overwhelming. This session will explore why uncertainty weighs so heavily on mental and emotional wellbeing and share 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.
In recognition of Mental Health Awareness Month, the webinar will highlight realistic ways to find calm, stay grounded, and build stability in the midst of change. + FREE CE for professionals.
Register here for the session.
| | Updates in WM with Dr. Sheeba Thomas | | | | Almost 1,000 views in just two weeks! See why our community is buzzing about a recent recording we shared. Dr. Sheeba Thomas, of MD Anderson Cancer Center in Houston, TX, recently visited the IWMF's Central Texas Support Group's meeting to present an update on WM. | | Vaccines and Immunity: Preventing Infection in Lymphoma Patients and Care Partners | | |
Join IWMF's partner, Lymphoma Research Foundation (LRF), for their upcoming webinar on Tuesday, May 26, from 12:00 - 1:00pm EDT on vaccines and immunity.
Join featured speaker, Dr. Fareed Khawaja (The University of Texas MD Anderson Cancer Center), to cover these important topics:
- Vaccine Safety and Effectiveness for Lymphoma Patients
- Lymphoma Treatment and Compromised Immunity
- Timing of Revaccination and Seasonal Vaccination
- Current Vaccine Guidelines for Lymphoma Patients (e.g. Flu, Shingles, COVID-19, Pneumonia)
- Recommendations for Care Partners and Loved Ones
- Question and Answer Session
Register here for the session.
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IWMF Hosts SGL Workshop:
The Power of the Peer Collective
| | IWMF Support Group Leaders: Shelly Postek, Eileen Sullivan, Gene Batiste, Sharon Piotrowski, Steve Pine, Meg Mangin, and Lisa Wise | | |
On April 30, IWMF held the 2026 Support Group Leader (SGL) Workshop: The Power of the Peer Collective. This dynamic hybrid gathering, hosted by our SGL Leadership Committee, brought together 50 of our dedicated Support, Affinity, and Global Partner leaders both in Columbus, OH, and via Zoom.
Through interactive roundtable "Idea Labs" and panel discussions, our volunteer leaders shared their expertise and sharpened their skills. Everyone walked away with a renewed sense of connection and a "toolbox" full of new strategies. We are incredibly grateful to our volunteers who work tirelessly to improve outcomes for the WM community worldwide!
| | 50 of our dedicated Support, Affinity, and Global Partner leaders came together | | |
From a new attendee: “As a new Support Group Leader (SGL), I attended the meeting as an intro into being an SGL and meet the other SGL's. I also gained helpful insight into how to successfully run support group meetings and the variety of ways this can be accomplished.”
Interested in supporting the WM community? If you would like to learn more about becoming a support or affinity group leader, contact us at office@iwmf.com
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Dr. Mondello Presents
to Italian WM Support Group
| | The Italian WM Patient Support Group was honored to welcome Patrizia Mondello, M.D., PhD (Mayo Clinic), who presented in Italian to over 60 attendees: “Molecular underpinnings of WM: From tumour cells to immuno micro-environments”. Access recording (for Italian speakers.) | | |
Upcoming IWMF Affinity & Support
Group Meetings
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WM LGBTQ+ Affinity Group - May 23 at 12:00pm EDT. Join Gene and Jane for a sharing discussion. Contact office@iwmf.com to be added to the mailing list.
WM People of Color Affinity Group - June 5 at 1:00pm EDT. Join Paula and Mike for a sharing discussion. Contact office@iwmf.com to be added to the mailing list.
View our full calendar of events here.
| | Funds Open for U.S. Patients | | Beyond IgM: Connected Through Wellness | | |
At this year’s Educational Forum in Columbus, wellness was woven throughout the weekend. From wellness walks led by veteran patients to chair yoga and balance sessions guided by experts, attendees were invited to pause, connect, and care for themselves—while learning practical tools to support their WM journey.
As one WM wellness community participant shared:
"There's no IgM number that can measure how important it is to feel stronger and more positive when living with a chronic cancer. The IWMF is making a unique contribution to WM patient care through the wellness program. It is a remarkable program."
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Interested in joining IWMF’s global wellness community for patients and care partners?
✔️ Explore the IWMF Wellness Calendar and drop into an upcoming class.
✔️ Read the latest IWMF May Wellness Newsletter.
✔️ Listen to a surprising AI‑generated podcast highlighting IWMF Wellness in May.
✔️ Come celebrate with us on May 18 at 2pm EDT - 5 years of wellness as a community!
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.
| | Wellness Questions? Please reach out to our Director of Integrative Wellness and Patient Communications, Ann MacMullan. | | | | |
Did you know that IWMF is going to be launching our very own podcast, debuting this summer?
Hint: you will absolutely recognize the voices. Stay tuned for more details!
| | 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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