The IWMF mission statement is to support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) to improve patient outcomes while advancing the search for a cure.

- Special Announcements -

Videos from IWWM-12 Available

On October 17-19, IWMF had the privilege of attending the International Workshop on WM (IWWM-12) Meeting in Prague, Czech Republic. Throughout the conference, we were excited to meet with top WM clinicians and researchers from around the world to discuss their research and learnings from the weekend program. Check out the video playlist on our YouTube Channel.

Story of Hope Update

Tom White: Coming Full Circle

"I never imagined how Genentech and the development of Rituxan would affect the lives of so many—including my own!"

Almost 300 WM-VOICES Received!

Calling all community members with WM in the US, UK, Australia, Canada, and the Netherlands! Your voice matters! Participate anonymously in the WM–VOICE study to share what YOU value the most regarding treatment options. In just 30 minutes, you can shape the future of treatment. THANK you to the nearly 300 WM-VOICES who have completed the important survey, let's keep raising our voices to ensure more data is collected! Join us here:

• For English: www.amsterdamumc.org/wm-voice-eng
• For Québec French: www.amsterdamumc.org/wm-voice-fr
• For Dutch: www.amsterdamumc.org/wm-voice-nl

- Education-

Important Upcoming Webinar from A Patient Story

Finding a doctor to partner with is important in your WM care. 

A strong partnership with your doctor leads to more informed decisions, personalized care, and a greater sense of control. Join Dr. Jonas Paludo from Mayo Clinic and WM patient advocate Lisa Ramirez as she discusses how her decisions led to being treated by Dr. Paludo and forming a trusted patient-doctor relationship.

This webinar is designed to help you

• discover the importance of second opinions and how even top specialists recommend them,
• understand how a WM specialist can provide a unique perspective having seen more cases,
• learn about shared decision-making in Waldenström treatment,
• hear first-hand experiences of navigating a chronic cancer with your doctor by your side, and
• get practical tips for advocating for yourself or a loved one in the treatment process.

Our very own IWMF Chair Emeritus, Pete DeNardis, will host the program. Register here.

AL Amyloidosis Webinar on November 13th

Join Martin Vanderlaan (IWMF LIFELINE Volunteer) and Dr. Raymond Comenzo (Tufts University Medical Center) as they discuss recent developments in AL Amyloidosis, a potential complication of Waldenstrom’s macroglobulinemia. Have your questions about amyloidosis answered in this special online event! Register here.

With Medicare Open Enrollment open now through December 7th, it’s important to understand changes are on the horizon. Join Amy Niles, Chief Mission Officer at the PAN Foundation, as she walks us through two new changes to Medicare Part D—including an annual out-of-pocket cap for prescription medication costs and the new Medicare Prescription Payment Plan. You won’t want to miss this informative session as you determine the best choices for your Medicare coverage. Register here.

Lymphoma Research Foundation:

National Lymphoma Workshop WM Session

Save your spot at our upcoming Virtual National Lymphoma Workshop on Saturday, November 16, 2024, and you will: 

* Learn About Lymphoma: Learn about your specific type of lymphoma, treatment options, clinical trials, and emerging therapies during the comprehensive disease-specific breakout sessions. 

You won't want to miss the WM breakout session at 11:15AM ET.  The session speaker will be Dr. Jithma Abeykoon of Mayo Clinic, Rochester, MN.

* Create a Community: Ch at forums offer the opportunity to meet others with the same type of lymphoma.

November Wellness Webinar:

Measuring Quality of Life in WM and Other “Tired” Topics 

Join Dr. Shirley D’Sa to learn more about her involvement in recent research that uses wearable technology to measure the experience of living with WM. During our webinar, we’ll discuss the variables involved in measuring quality of life, such as sleep quality, pain levels, and fatigue levels; and we’ll hear the conclusions drawn as a result of this research. Dr. D’Sa will also shed light on the relationships among anemia, fatigue, iron, and energy levels relevant to WM patients.  Come with all your questions for Dr. D’Sa! 

Upcoming Bing-Neel Support Group

The IWMF International Support Group for patients and care partners interested in Bing-Neel Syndrome and its potential complications will meet in November. Two meeting times are offered to accommodate a diversity of time zones. Individual pre-registration is required, and you will get your own personal link to log in to the meeting you selected. 

This meeting will provide an update on the latest thinking about treatment options for BN syndrome. We will watch a short video from from Dr. Shayna Sarosiek of Dana-Farber Cancer Institute, and then have an opportunity to connect with one another.

BN Meeting #1 - Sunday, November 17th, 1:00PM-3:00PM Eastern Time, GMT-5. Register here.

BN Meeting #2 - Sunday, November 17th ,6:00PM -8:00PM Eastern Time, GMT-5 (November 18th in Australia). Register here.

Chair Yoga for WM on November 4th

Yoga is an ancient mind-body practice that can improve quality of life for those affected by chronic illnesses like cancer. Join guest teacher Sharon Rivet for an accessible 45-minute Chair Yoga session to address the ups and downs of WM. Sharon, a Kripalu-certified Ayurvedic Yoga Teacher and Usui Reiki Master, was diagnosed with WM in 2018. Sign up here.

Cardio Flow on Friday, November 8th

Challenge your coordination and balance while addressing symptoms such as fatigue and peripheral neuropathy. Get your body moving with repetitive, simple movements within the safe space of our WM community. Improve blood flow, balance, and mobility! Optional: stick around to connect with the WM wellness community after class. Sign up here.

Imerman Angels Caregivers Community Webinar

November 12th at 7:00PM Eastern Time

Dr. Allison Applebaum will explore four important lessons she’s learned from her career in caregiving science and her experience as a family caregiver:

• Caregivers are responsible for conveying patients’ personhood, for telling their story, and making it matter to those who are providing medical care.
• Caregivers are critical members of the healthcare team and have responsibilities ranging from performing medical and nursing tasks, to case management, to healthcare communication.
• Emotions are messengers, and negative emotions experienced by caregivers can teach us how to live life more fully and authentically.
• Despite suffering, caregiving provides an opportunity to connect to meaning and purpose. 

Attendees will leave the talk feeling empowered and with concrete tools and strategies they can use to navigate caregiving successfully. Register here.

WM Military Veteran Support group- November 21st

IWMF is proud to be hosting a discussion group for WM community members who are military veterans. The meeting will be held Thursday, November 21st, from 2:00PM – 3:00PM ET via Zoom. Topics for discussion will include sharing experiences, navigating the Veterans Administration, and more. The meeting will be moderated by Ray V., IWMF Volunteer and Vietnam Veteran. 

Register HERE for the meeting.

November Wellness Calendar

WM Community Corner

Lisa Wise, IWMF Vice-Chair of Information & Support, gave the opening remarks last month for the Women's Health and Cancer Conference held at the University of Vermont Cancer Center. Lisa's impactful session on Embracing the Environment of Support is available here.

A BIG thanks to Tammy and Al for representing IWMF at the Lymphoma Research Foundation Ed Forum in Brooklyn, NY on October 26th!

Carole Zavala's Warrior Within artwork was chosen for Cure Magazine's 2025 calendar! Congrats Carole! Keep an eye out for the calendar here.

Let's Work Together to Accelerate the Cure!

Accelerate the Cure is our $31 million USD effort, over five years, to find a cure and support those with WM and their caregivers. Global researchers have a new set of WM research targets, and they are afire with excitement. We believe we can find that cure, and we hope 100% of our WM family will contribute.

IWMF has three Research Opportunity Funds: One for global research, one to accelerate clinical trials, and one that funds the next generation of researchers. A fourth fund ensures that IWMF continues to advance life-changing education and support programs while we push for that cure. Visit the Ways to Give page on our website to learn more about the Opportunity Funds and other ways to support this effort.

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