August 21, 2026 - Volume 6, Issue 16 | | 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) and to improve patient outcomes while advancing the search for a cure. | | | Special News | | WM Research | | Summer Video Series | | Events and Webinars | | WM Community | | Support | | Living Well | | | Coming Soon: An IWMF Podcast | | We’re thrilled to announce the upcoming launch of our new podcast, Waldenstrom Unplugged: Words Matter, on September 15, World Lymphoma Awareness Day! | | | | |
Featuring two well-known WM voices, Professor Shirley D’Sa and patient advocate Bob Perry, the podcast brings together expert insight and lived experience to make WM clearer, more relatable, and easier to navigate.
Have a question for Shirley or Bob? Send it to PR@iwmf.com for a chance to have your question featured on the podcast! Stay tuned for more on how to listen.
| | IWMF Welcomes Two New Staff Members | | IWMF is pleased to welcome Whitney Musitano as Vice President of Donor and Volunteer Engagement and Faith Bone as Senior Manager, Executive Operations and Governance. Together, they bring more than 40 years of combined leadership experience in nonprofit management, donor and volunteer engagement, executive operations, governance, fundraising, and organizational strategy. | | Whitney’s background includes leading national volunteer engagement strategy and building strong donor and community relationships, while Faith brings deep expertise in operations, board governance, process improvement, and cross-functional collaboration. | | Their complementary skills will help strengthen IWMF’s internal operations and expand meaningful engagement with patients, care partners, clinicians, researchers, volunteers, and supporters. Learn more in the IWMF Newsroom. | | Dr. Tina Bagratuni Shares Hope | | |
Dr. Tina Bagratuni shares her insights on the latest developments in Waldenström macroglobulinemia (WM) research from the European Hematology Association Congress (EHA) 2026.
She discusses the growing number of treatment options, the global collaboration driving progress in WM research, and the ongoing challenges of understanding the biology of the disease to achieve deeper and longer-lasting responses.
Watch the video to learn how emerging therapies and scientific discoveries are helping improve outcomes and quality of life for people living with WM.
Learn more in her video.
| | Dr. Tina Bagratuni, PhD, is the Principal Investigator and Group leader of the Waldenstrom's Macroglobulinemia Biology Group at the National & Kapodistrian University of Athens, Greece | | A Favorite from the Ed Forum | | |
During this session, physicians answered your most pressing questions in real time, offering practical insights, clinical perspective, and clarity on complex issues across the WM journey.
Ask the Doctors features a panel of incredible rockstar WM doctors including Stephen Ansell, Christian Buske, Jorge Castillo, Shirley D'Sa, Peter Forsberg, Yazeed Sawalha, and Steven Treon.
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More with Dr. Steven Treon:
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What's Coming Next in Clinical Trials pt. 2 with Steven Treon - Watch Here.
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Horizon Watch: Emerging Treatments and Trials in WM with Steven Treon, MD - Watch Here
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Webinar: Innovative Approaches to Rare Disease Care (NORD) - August 27 at 3pm ET on Zoom Register here.
Building an Integrative Wellness Plan for WM (IWMF) - Thursday, September 17 at 12pm ET on Zoom - Register Here
(see more info below.)
Virtual Blood Cancer Care Conference (Blood Cancer United) - Saturday, September 19 from 11:30am - 3:50pm ET - Register Here
IWWM-13 Patient Highlights Session (IWMF and IWWM) - Saturday, October 17 from 9am-2pm PT in Palm Springs, CA - Register here.
| | WM Caregiver Raises $6K for Cancer Research | | |
When WM caregiver Ken Gollersrud Ayala (pictured at far right) decided to participate in Obliteride, a fundraising event supporting cancer research at Fred Hutch Cancer Center, he hoped to bring together family, friends, and members of the WM community to make a difference.
On August 14, Ken and his family walked the 5K route along Lake Union in Seattle. He was joined by his wife, Lita, their daughter Celia, family friend John, and Jennifer, a member of the IWMF Washington support group. Thanks to the generosity of supporters, Ken’s team, B-Cells, has raised nearly $6,000 for Fred Hutch Cancer Center. “It was a beautiful day, and I’m so grateful to everyone who supported this effort,” Ken said.
And Ken is already thinking about next year. For the 2027 Obliteride, he hopes to bring together 20 walkers and raise $10,000, with family and friends all invited to join.
The WM Caregivers Support Group meets once a month. See below for more info.
| | Sometimes, Support Means "Roughing" It | |
On a sunny Saturday in August, WM patient and patient advocate Bob Perry led a group of WM patients, caregivers, and advocates into the woods. Not just any woods - the Wild Reset Woodlands, a meeting place without walls, tables, or projectors in New Forest, England.
Under a green canopy of trees, circled around a fire in camping chairs, the Bournemouth and District WM Support Group laughed, talked, and shared their packed lunches. The group was treated to a mindfulness exercise by forest custodian Layne Hamerston, and guest speaker WM specialist Dr. Helen McCarthy shared her knowledge and insights with the group, patiently answering questions.
It was a meaningful and memorable gathering, hosted in a peaceful and stress-reducing natural environment. "That was exactly what a support group meeting should be like: sharing, meeting, supporting and empathizing," said Bob Perry. "We are a true WM family, and let's do this again next summer!"
To find support near you, scroll down or visit IWMF.com.
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WM Caregivers Support Group - Thursday, September 3 at 2pm ET. This meeting is open to all those supporting others with WM, as well as those living with WM themselves who are caregivers. Meets on the first Thursday of each month. Sign up here.
SE Florida WM Support Group (open to WM community) Tuesday, August 25 at 4pm ET. Guest speaker Dana Green, award winning author, will talk about his journey with Waldenstrom as well as his writing. For Zoom link or more info contact: beverleyhjohns@gmail.com
| | 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:
| | Webinar: Explore an Integrative Approach | | |
You may have heard that integrative approaches can support wellbeing during cancer care. But why might these approaches be helpful—and how can they become part of a personalized approach to care?
Join Dr. Alissa Huston, Co-Medical Director of the Pluta Integrative Oncology & Wellness Center, for an exploration of integrative wellness through a patient scenario based on common experiences in oncology care. Dr. Huston brings deep expertise in evidence-based integrative oncology, along with experience speaking directly to the WM community at IWMF’s 2024 Educational Forum on optimizing quality of life through integrative oncology.
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Dr. Huston will look beyond the diagnosis to explore how factors such as symptoms, treatment experiences, emotional wellbeing, lifestyle, personal goals, and quality of life can shape personalized wellness recommendations. Together, we’ll discover approaches that may help address common challenges such as anxiety, fatigue, sleep concerns, pain, peripheral neuropathy, and the uncertainty that can come with living with a rare cancer diagnosis.
Dr. Huston will also discuss how patients and caregivers can partner with their healthcare teams and highlight integrative wellness resources available to the WM community, including through the IWMF Integrative Wellness Program. The session will conclude with a Q&A where attendees can ask questions and learn more about whole-person care. Pre-registration is required, register here.
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Check out IWMF's Wellness Calendar.
Receive IWMF's monthly Integrative Wellness Newsletter.
Reach out with any wellness-related questions.
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This e-newsletter is a free service to WM community members to share WM related news and events.
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