September 11, 2026 - Volume 6, Issue 17 | | 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. | | | Remembering Dr. Robert A. Kyle | | World Lymphoma Awareness Day:
Podcast Launch | | New NCCN Guidelines for WM | | Events and Webinars | | Community Support | | Living Well | | | Remembering Dr. Robert A. Kyle | | The IWMF and the worldwide WM community mourn the passing of Dr. Robert A. Kyle, a visionary physician, researcher, mentor, and treasured friend of IWMF. Dr. Kyle died peacefully on September 2 at the age of 98, surrounded by his family. | | Dr. Steven Treon, Dr. Robert Kyle, Dr. Meletios A. Dimopoulos at the 2002 International Workshop on Waldenström's Macroglobulinemia | | Known as the “Father of Myeloma,” Dr. Kyle made extraordinary contributions to our understanding of multiple myeloma, MGUS, amyloidosis, and Waldenstrom macroglobulinemia. He joined the IWMF Board of Trustees in 2004 and served until 2019, including a term as Chair of the Scientific Advisory Committee. He was a trusted voice whose thoughtful counsel helped guide IWMF through its growth. As IWMF Board Chair Emeritus Carl Harrington recalled, “When Bob Kyle spoke at the IWMF Board, we all listened.” | | Dr. Kyle moderating an Ask the Docs / Q&A session at an IWMF event | | Dr. Kyle was also a beloved presence at IWMF Educational Forums, where he moderated “Ask the Doctor” sessions and generously shared his knowledge with patients and families. His influence continues through the IWMF's Robert A. Kyle Career Development Awards and the IWWM's Robert A. Kyle Award, recognizing and supporting those advancing the field of WM. | | Dr. Kyle tucking in to a big piece of chocolate cake, next to former IWMF staff member Sara McKinney at an IWMF event | |
Those who knew him remember not only his brilliance, but his humility, kindness, curiosity, wonderful stories, and his legendary love of chocolate cake. He will be deeply missed.
Stay tuned for IWMF's developing plans to honor Dr. Kyle’s legacy. In the meantime, please send any fond memories to PR@IWMF.com.
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World Lymphoma Awareness Day
September 15
| | IWMF honors World Lymphoma Awareness Day with the launch of its new podcast, Waldenstrom Unplugged: Words Matter, featuring Professor Shirley D’Sa and patient advocate Bob Perry. Together, they share expert insight and lived experience to make WM clearer, more relatable, and easier to navigate. Hear a snippet, below: | | | | |
How to listen to Episode 1: You will receive an early-morning invitation directly to your inbox on Tuesday, September 15 - with the link to listen!
Have a question for Shirley or Bob? Send it to PR@iwmf.com for a chance to have your question featured on the podcast!
| | New NCCN Guidelines for WM | | The updated NCCN Guidelines for Waldenström Macroglobulinemia (Version 1.2027) move away from "one-size-fits-all" treatments and emphasize tailoring therapy based on a patient's specific genetic features. | |
To ensure your medical team is following the most current standards, here are some questions you might ask based on the new guidelines:
- "I was reading the latest NCCN Guidelines for Waldenstrom. Are the treatment options we are discussing today aligned with their preferred recommendations?"
- "Have we run genetic testing for MYD88, CXCR4, or TP53 mutations? If so, how do my specific results affect whether I am classified as standard-risk or high-risk under the new guidelines?"
- "Because Waldenstrom is so rare, I’d like to get a second opinion from a specialist to confirm our plan matches the latest standards. Can you recommend someone, or help me share my records?"
For more info, go to IWMF.com.
| | Building an Integrative Wellness Plan for WM (IWMF) - Thursday, September 17 at 12 p.m. ET on Zoom - Register Here to receive Zoom invite, as well as the followup recording with resources. | | |
Rethinking Rare Cancer Research (NORD) -
Thursday, September 17 at 12 p.m. ET on Zoom -Register Here.
Panel includes Marcia Klepak, a WM patient who has been in 8 clinical trials for WM in the last 25 years.
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Virtual Blood Cancer Care Conference (Blood Cancer United) - Saturday, September 19 from 11:30 a.m. to 3:50 p.m. ET - Register Here.
At 1:15 p.m. ET there will be a WM-specific Breakout session with Dr. Joshua Richter of Mount Sinai.
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IWWM-13 Patient Highlights Session (IWMF and IWWM) - Saturday, October 17 from 9 a.m. to 2 p.m. PT in Palm Springs, CA -
There are limited in-person seats left. Virtual attendance has been expanded to 500 attendees! Register here.
| | Our Support Group Knows How to Party! | |
by Stacia Friedman, member of IWMF's Philly Support Group
Walking into Lisa and Steve's lovely home for the Philly Support Group’s backyard bash, I didn’t know what to expect.
After a year of attending Zoom meetings, I had no idea of the true spirit of our group, led by Lisa Wise and Andrea Bensusan. It isn’t just about learning the latest WM treatments and “kvetching,” it’s about celebrating our journeys, making new friends and, if Lisa has anything to do with it, nibbling on exquisite homemade chocolates.
More than 20 members gathered for lunch, laughter, meditation with IWMF's Ann Grace, and many stories. The funniest came from Lisa, who, with spot-on comic timing, described turning physical therapy into a dog-walking business to combat her fatigue.
I left feeling elated, the weight of facing cancer alone lifted, and already looking forward to the next gathering.
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Stacia Friedman is a freelance journalist who was first diagnosed with CLL in 2020. Since then, her diagnosis evolved into WM, and now Marginal Zone Lymphoma. She joined the Philly Support Group in 2025, and looks forward to future meetings.
If you're in the Philly area, be sure to attend the next in-person fall meeting, "Chili in Philly."
| | Questions? Reach out to office@iwmf.com and a staff member will provide support. | | | | |
LGBTQ Affinity Group:
Thursday, September 17 at 2 p.m. ET.
We need and want to be available to support each other in a brave and safe space to receive and share care and support.
| | Funds Available for U.S. Patients | | |
If you need help covering the costs of WM treatment, these patient advocacy organizations offer financial assistance programs to help with copays, premiums, and other out-of-pocket expenses:
| | For Blood Cancer Awareness Month | | | | Try this 20-minute meditation that uses guided imagery to explore the ever-renewing ecosystem of bone marrow. Research highlighted by MSKCC suggests guided imagery may help with pain, fatigue, stress, anxiety, and sleep. | | For many people with WM and other blood cancers, “bone marrow” can bring up difficult associations with biopsies, infiltration, abnormal cells, and difficult news. In this meditation, we make space for another understanding of marrow—as living tissue, a place of creation, and an essential part of you. | | |
Check out IWMF's Wellness Calendar.
Receive IWMF's monthly Integrative Wellness Newsletter.
Reach out with any wellness-related questions.
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