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International Waldenstrom's Macroglobulinemia Foundation

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International Waldenstrom's Macroglobulinemia Foundation

WM is usually an indolent and chronic disease that is treatable, but not yet curable.

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is a patient-founded and patient-driven, nonprofit organization dedicated to providing support and education to everyone affected by WM while advancing the search for a cure. Waldenstrom's macroglobulinemia is a rare form of non-Hodgkin's lymphoma, whereby the patients usually experience an infiltration of lymphoplasmacytic (cance

r) cells in the bone marow. Approximately 1,500 new cases of WM are diagnosed each year in the US, and about 3,000 worldwide. The median age of diagnosis is 63 years, although some have been diagnosed as early as 19 and as late as 85. Average life expectancy is 11.5 years, although recent improvments in treatment options are providing a more promsing future for patients.

08/10/2026

💙 Connection. Knowledge. Community.

More than 40 members of the WM community came together on August 1 for the annual CO/WY Support Group hybrid meeting at the Colorado Blood Cancer Institute—joining both in person and virtually from across the country.

The gathering featured meaningful conversations, expert insights, and shared support around the WM journey. Attendees heard from Dr. Jeffrey Matous, Kate Mimken, MSN, APRN, FNP-C, and Dr. Peter Forsberg on topics including treatment options, emerging therapies, blood viscosity, and the important role of attitude, exercise, and nutrition.

A special highlight was celebrating Bill B. and his 20 years of dedicated volunteer service to IWMF and his commitment to building a strong, lasting CO/WY community. 💙

IWMF is grateful to our incredibly dedicated support group leaders for organizing this event, and to the CBCI medical team for sharing their time and expertise with the WM community.

Find connection and support for your WM journey: https://iwmf.com/get-support/

08/09/2026

🌿 This Week’s IWMF Wellness Classes | August 10–14

For everyone in the WM community, wellness is about caring for the whole you—mind, body, and spirit. Join us this week for opportunities to move, breathe, and connect.

💻 All classes are virtual and held via Zoom.
🕐 All classes are listed in Eastern Time (ET).

🪑 Fully Seated Chair Yoga
Monday • 2 PM ET

🌬️ Just Breathe
Tuesday • 12 PM ET

🧘 Slow Flow Mat Yoga
Wednesday • 11 AM ET

IWMF Integrative Wellness. Supporting the Whole You.

Find class details and sign up through the IWMF Events Calendar at IWMF.com.

08/07/2026

Can Mindfulness Help Manage Cancer-Related Pain?

Living with cancer can bring pain, discomfort, and stress—but mindfulness may help.

Research shows that mindfulness-based interventions can help people with cancer reduce pain-related distress while also improving emotional well-being, sleep, and stress when used alongside standard medical care.

Take a few moments for yourself with our guided Meditation to Manage Pain, created for the WM community.

🎥 Watch here: https://ow.ly/PAFN50ZxHR0

Explore more free guided meditations and wellness resources through the IWMF Integrative Wellness Program at IWMF.com 💙

Sources:
📎 A Systematic Review: Mindfulness Intervention for Cancer-Related Pain - https://ow.ly/9PoI50ZxHR4
📎 Mindfulness-based interventions for psychological and physical health outcomes in cancer patients and survivors: A systematic review and meta-analysis of randomized controlled trials
https://ow.ly/I4uo50ZxHR1

08/06/2026

Sometimes the biggest breakthroughs begin with a single "yes."

In this clip, Dr. Zachary Hunter—whose genomic research at the Bing Center for Waldenström's Macroglobulinemia has helped transform our understanding of WM—shares how what was supposed to be a one-year job with Dr. Steven Treon turned into a career dedicated to advancing WM research.

That journey ultimately contributed to the discovery of the MYD88 and CXCR4 mutations, discoveries that have reshaped our understanding of WM and continue to inform research and treatment decisions.

Did you know? MYD88 mutations are found in approximately 95% of people with WM, while CXCR4 mutations are present in about 40%.

🎥 Watch the full Robert Kyle Awards session from the IWMF 2026 U.S. Educational Forum, where Dr. Hunter moderates presentations from IWMF-funded investigators exploring the next generation of WM research: https://ow.ly/WVA050ZwOrR

Featuring Dr. Pieter Langerhorst, Dr. Maria Luisa Guerrera, and Dr. Hao Sun.

Dana-Farber Cancer Institute

08/03/2026

Meet Linda, co-leader of IWMF’s WM Caregivers Support Group, and a true champion for caregivers everywhere.

When Linda’s husband Ed was diagnosed with Waldenstrom macroglobulinemia in 2011, they faced fear and uncertainty. But finding IWMF at a Chicago Blood Cancer United conference changed everything—connecting them with expert doctors and a supportive community that gave them hope and strength.

“Caregivers are the silent glue that can hold everything together in these journeys," Linda shares. "Sometimes you just need someone to talk to who understands what you are going through. I want to extend that safe space to other caregivers.”

Are you a caregiver or supporting someone with WM? You’re not alone. Join Linda and the WM Caregivers Support Group on August 6 at 2pm ET for understanding, encouragement, and connection. All caregivers and those living with WM who support others are welcome!

🗓️ Meets the first Thursday of every month
🔗 Sign up: https://ow.ly/5kCt50ZuOnI

For more resources and support, visit https://ow.ly/j8Vs50ZuOnJ.

07/31/2026

Don't miss your chance to be part of the conversation that's moving the WM community forward.

“The patient forum will be an amazing and unique opportunity for WM patients to be brought up to date on the latest research in WM. A summary of the previous three days of presentations from the world’s leading WM researchers will be presented to patients attending this forum. I look forward to joining you in Palm Springs!” – Paul Kitchen, IWMF Board Chair

For the first time ever, patients, caregivers, and WM experts will come together for a special Patient Highlights Session—bringing you the most important breakthroughs from the IWWM-13 meeting being held in Palm Springs, California this October.

Discover the latest research, treatment advances, and practical insights that are shaping the future of Waldenstrom’s macroglobulinemia care.

Register now for this FREE session and get empowered with knowledge!

Learn more & sign up: https://ow.ly/xVHC50ZtTI1

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07/30/2026

🩸WM patients are at the heart of progress—your participation in clinical trials can unlock new, life-changing treatments. But finding your way through the clinical trial landscape isn’t always easy.

Did you know that connecting early with a Clinical Trial Nurse Navigator can give you the confidence and support you need to make informed choices, whether you’re exploring new options or planning ahead?

At our recent IWMF DC/Maryland/N. Virginia Support Group meeting, Meghan McGrath, NP from Blood Cancer United, shared expert advice on clinical trials and how the BCU Clinical Trial Support Center can guide you every step of the way. Don’t wait—discover how to take charge of your journey!

🩸Watch Meghan's powerful presentation: https://ow.ly/w7uB50ZsnLR

🩸Ready to connect? Reach out to a Clinical Trial Nurse Navigator at Blood Cancer United: https://bloodcancerunited.org/resources/patients/clinical-trial-support-center-ctsc

07/29/2026

You've been diagnosed with cancer... but what stage is it?

For many cancers, that's one of the first questions people ask. But Waldenstrom macroglobulinemia (WM) isn't staged the way many other cancers are.

If you've searched online and found "Stage IV" as your answer, take a deep breath.

In this clip, Dr. Stephen Ansell, PhD, of Mayo Clinic Comprehensive Cancer Center
explains why. Because WM commonly involves the bone marrow—where these cells normally begin their development—the traditional staging system may label it as Stage IV, even though that designation doesn't have the same meaning it does for many other cancers.

In WM, treatment decisions are based on symptoms, blood counts, IgM levels, and how the disease is affecting the body—not on a cancer stage.

Understanding WM starts with understanding how it behaves—and why it doesn't always fit the rules of other cancers.

This is just one insight from Dr. Ansell's comprehensive session on WM complications, where he explains how Waldenstrom can affect the body, why those complications occur, and how understanding the disease helps guide treatment decisions.

🎥 Watch the full session from the IWMF 2026 U.S. Educational Forum: https://youtu.be/gzDkoRDCCwE

📝 Then test your knowledge with our WM Complications Quiz: https://www.surveymonkey.com/r/WMComplications2026

07/27/2026

Sharon Piotrowski, one of IWMF's most active volunteers and a cherished fitness instructor with IWMF's Wellness Program, has announced that she will be officially retiring from her 18-year career as a Personal Trainer this month.

"No matter what diagnosis you carry, committing to a healthy lifestyle - through movement and proper nutrition - is one of the most powerful tools you have to navigate life's challenges. The IWMF Wellness Program is here to give you those exact tools. Please keep using them."

Join Sharon's last IWMF fitness class onThursday, July 30 at 1pm ET.
Register here: https://ow.ly/Pcia50Zsng4

Sign up to receive IWMF Monthly Wellness News to gain access to all our integrative wellness offerings: https://ow.ly/e23h50Zsng3

We have been so blessed to have had access to Sharon's expertise and personal journey through her generous donations of time over the years, but this is not goodbye. Sharon will continue volunteering for IWMF by leading the Sarasota support group, providing tips for our wellness community, and more. Lucky us!

Thank you, Sharon!

07/24/2026

The latest WM Digest is here! 🌟 Welcome to your fortnightly digital guide to clear facts about Waldenstrom macroglobulinemia (WM), steady guidance, and hope.

Find vital information and education about WM, hear the latest WM research updates, meet WM community members who share their stories, and get diverse support for managing WM.

📰 Get access to the latest issue: https://conta.cc/4yixeyR

Whether you’re a patient, caregiver, healthcare professional, or advocate, IWMF is here to support you. Stay connected, stay hopeful, and let’s navigate Waldenstrom macroglobulinemia—together.

🔗 Join IWMF to receive the WM Digest direct to your inbox: https://ow.ly/E8gC50YzMQI

Address

1449 S Michigan Avenue STE 13329
Chicago, IL
60605

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+19419274963

Website

http://www.iwmf.com/

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