The Waldenstrom's Weekly

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 -

IWMF Board Meets to Discuss 2025 Priorities

On November 10th, members of the IWMF Board of Trustees and Home Office Staff met in person and over Zoom on behalf of the WM community. Throughout the day, the group shared plans for how best to accomplish the mission of the IWMF in 2025. Stay tuned for many exciting things to come!

Thank you to our volunteer IWMF Board of Trustees. We are grateful for ALL you do to help the WM community around the world!

Photo: Some Board members gather at the airport (left to right)- Bob Perry (UK), Carl Harrington (IWMF Chair Emeritus), Carl Lisman (Secretary/Treasurer), Paul Kitchen (IWMF Board Chair), and Saurabh Seroo (India).

Two NEW IWMF Webinar Recordings Available!

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.

Watch the recording here and Dr. Comenzo's slides 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. Watch the recording here.

*During the Q&A portion of the program, a question was asked that Amy needed to get back to us about, and here is the answer: "If a particular drug is NOT covered under the formulary of the Part D plan, it will not be counted toward the Medicare Part D cap. This points to the importance of evaluating Part D plans during open enrollment to make sure prescription medications are covered."

IWMF Staff Member Shares Wellness Resources at LLS Living Well with Blood Cancer Event

IWMF Wellness Program Coordinator, Ann Grace MacMullan, shared a yoga and movement practice at a recent Leukemia & Lymphoma Society (LLS) Living Well with Blood Cancer event in Philadelphia, PA. “I was so pleased to share the tools of yoga therapy with a diverse group of blood cancer patients. I also got to hear my father’s WM doctor speak about emerging therapies and met a talented oncology massage therapist whom I hope to bring into IWMF wellness programming soon.” Ann is pictured with LLS event organizer Ruby Nava-Ramos, Senior Manager, Patient & Community Outreach.

500 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. Check out the updated survey graph below on respondents per country as of November 14, 2024:

THANK you to the 500 WM-VOICES who have completed this important survey so far, 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-

Upcoming Programs from

Lymphoma Research Foundation

Save your spot TOMORROW at the upcoming Virtual National Lymphoma Workshop on Saturday, November 16, 2024, to

* 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: Chat forums offer the opportunity to meet others with the same type of lymphoma.

Treating Lymphoma with Bispecific Antibodies

Tuesday, November 19 at 12:00PM ET

Featuring Dr. Jennifer Crombie, Dana-Farber Cancer Institute, and Dr. Manali Kamdar, University of Colorado

Overview and Understanding Bispecific Antibody Therapy
When to Consider Bispecific Antibody Therapy as a Treatment Option for Lymphoma
Looking Forward: Update on Clinical Trials for Bispecific Antibody Therapies
Managing Potential Treatment Side Effects and the Role of the Care Partner
Q&A

November Wellness Webinar:

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

Almost 200 registered! 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 the conclusions drawn from 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!

- Support -

December 13, 2024

1:00PM US Eastern Time

IWMF is proud to announce a new support group for individuals diagnosed with WM who identify as LGBTQ+ and their partners and caregivers. Group leaders Gene and Jane recently shared their thoughts about the importance and purpose of this new support group: "Focusing on the experiences, fears, and triumphs LGBTQ+ folks face, often in isolation, this group provides a brave, safe, and unique space where members can be their authentic selves while coping with the challenges of living and thriving with WM through an LGBTQ+ lens. Our intention is to focus on the highs and lows of diagnoses, emotions, and treatments while we build a community of mutual support and trust. Finally, we will raise our voices for acceptance, allyship, and understanding of our shared LGBTQ+ identity with the greater IWMF community."

Meet our leaders!

Gene Batiste, Ed.D. is the Chief Catalyst for With Respect Consulting based in Washington, D.C. In this role, he serves independent schools, college and universities, artistic, and nonprofit organizations by guiding DEIB, leadership, and organizational vision to action through transformative engagement. As a chief catalyst, Dr. Batiste engages with clients as an advisor, consultant, facilitator, leadership coach, presenter, qualitative researcher, and strategist. Gene comes from a military family, having lived in Japan, Hawaii, Washington, D.C., and San Antonio, Texas. He and his husband, Scott Honeychurch, a nursing administrator at George Washington University Hospital, live in Washington, D.C. with Bravo, their Welsh Terrier.

Jane Loud, MSW is a retired Licensed Clinical Social Worker having worked with individuals and families experiencing crisis and complex trauma. She, and her wife Rayleen Stubbs, a former business owner in healthcare reimbursement, software, and consulting, moved from New England to Myrtle Beach, SC in 2017 shortly after Jane was diagnosed with WM. They enjoy a life of travel in their RV, hiking, kayaking, and keeping in touch with a wide circle of friends and family.

TODAY! Full Moon Sound Bath at 2:00PM ET

Bask in the soothing vibrations of authentic Himalayan singing bowls, angelic chimes, and gentle healing chants. May help relieve pain, tinnitus, and manage tension. Headphones are recommended. Recharge your soul! Sign up here.

Bing-Neel Support Group THIS WEEKEND

The IWMF International Support Group for patients and care partners interested in Bing-Neel Syndrome and its potential complications will meet this weekend. 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.

Exploring Meditation with Kimberley Snow

Tuesday, November 19th, at 1:00PM ET

This three-part series explores a range of meditation techniques designed to decrease negative emotions and enhance physical and mental wellbeing. Each 30-minute session includes guided meditations plus a variety of resources. Sign up here.

Imerman Angels Caregivers Community Recording

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

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

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.

WM People of Color Support Group Meeting

December 6th at 1:00PM US ET

The WM People of Color Group will be having their next meeting for patients and caregivers in December. Attendees will join leaders Paula and Mike on Zoom with a guest speaker, Dr. David Bolon, a cardiologist at Manhattan Integrative Cardiovascular.

Friday, December 6th, 2024

1:00PM - 2:00PM U.S. ET

To join the mailing list for this group, contact Mpostek@iwmf.com