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.

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- Special Announcements -

📢 Save the Date!

Join us for the 2025 European Educational Forum on Wednesday, May 21st, in Chantilly, France!

This year, we’re thrilled to be working in partnership with Waldenström France, bringing you a unique opportunity to meet and engage with over 80 world-leading experts in WM through our collaboration with the European Consortium of WM (ECWM).

Don’t miss this incredible event to learn about the latest research, treatments, and strategies directly from the experts, while connecting with doctors, researchers, and fellow members of the WM community.

Stay tuned for more details—this is an event you won’t want to miss!

IWMF Physicians Directory Expansion in the US

For your convenience in seeking a consultation for a second opinion, we provide a directory of well-known cancer centers we work with and physicians/researchers who are very knowledgeable about WM. All the physicians in our Physicians Directory have agreed to be included in the directory for consultations.

IWMF January Torch - Did You Catch the Latest?

Did you see our eNews yesterday that the first issue of the 2025 IWMF Torch magazine has been uploaded to our website? Check out the latest issue here.

Advocacy Opportunity with EveryLife Foundation

Rare Disease Week on Capitol Hill

Where will you be on February 24-26? For those who can travel to Washington, D.C., please consider participating in Rare Disease Week on Capitol Hill!

This multi-day event, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress.

If you plan to register, please let us know at mpostek@iwmf.com so we can ensure that all WM Community members are connected prior to the event.

Interested in attending? Learn more and register here!

Paul Kitchen Wants to Hear Your WM-VOICE!

"Do you want to have a voice in future WM treatments? Do you want to tell doctors what’s important to you in choosing a treatment? Well, here’s your chance. Take the WM-VOICE anonymous survey! It’s easy to do and won’t take you a long time but it will enable you to tell doctors around the world what is important to WM patients. Speak your mind!

Note we have met the goal of 188 respondents in the US and the Netherlands, but we need more participants in Canada, the UK, and Australia. As a Canadian, I really want us to catch up! But everyone, make your voice heard and take the survey today!”

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

Thank you,

Paul Kitchen

IWMF Board Chair

- Education-

TWO Webinars from Lymphoma Research Foundation

January 15th and 28th

January 15th at 2:00PM ET

Highlights from the American Society of Hematology (ASH) 2024 Annual Meeting: B-Cell Lymphomas

Program Overview

Overview of Lymphomas
New Research Presented at ASH
The Role of Clinical Trials
Q&A

Program Speaker

January 28th at 4:00PM ET

Ask the Doctor about Lymphoma: Information for Newly Diagnosed Patients

Program Overview

Ask the Doctor About Lymphoma is a virtual series of two-hour, topic-specific programs that combine a presentation by a medical doctor with an extensive question and answer session.

This program will cover topics for newly diagnosed patients on watch and wait or considering other frontline options.

Program Speaker

Art & Creative Workshop from UICC on Jan. 15th

Sometimes an experience of cancer is difficult to put into words. Hosted by Union for Internation Cancer Control (UICC) and guided by art therapist Jacqueline Carmody, you’ll use art as a means to express your experiences of cancer. Sign up here.

- Support -

Mental Health Workshop on January 16th

Young WM Support Group Meeting

Tuesday, January 28th, at 8:00PM US Eastern Time

The International Young WM Support Group will be having a meeting in January for patients and caregivers under the age of 50. Attendees will join Co-Leaders Ryan, Deborah, and Jason on Zoom for a caring and sharing session, which will last approximately one hour.

Tuesday, January 28th

8:00PM - 9:00PM US ET

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

WM People of Color Support Group

February 7th at 1:00PM ET

The WM People of Color Group will be having their next meeting for patients and caregivers in February. Attendees will join leaders Paula and Mike, with a speaker on Intuitive Eating.

Friday, February 7th, 2025

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

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

- Wellness Program -

New Class! Dance Therapy on January 14th

Join Lynn Falk, a Board-Certified Dance/Movement Therapist, to engage in gentle movement, stretching, and dance. Experience your body in a positive way! We will warm up, find our groove, be a bit playful, and feel the joy of movement. No dance experience is necessary. Movement can be done from a seated or standing position, or both. Gather with others living with WM to find movement that feels good for you. Physical activity is the number one intervention for cancer-related fatigue! Sign up here to receive the Zoom invitation before class.

Gentle Yoga on January 17th

Roll out your mat to improve your flexibility, mobility, strength, balance, and bone density! This 60 minute all-levels mat class will move at a gentle pace, with mindful transitions up and down to the floor. Expect to use a range of tools of yoga such as breathing exercises, meditation, and yoga postures. We will leave time for a rest pose at the very end. No yoga experience necessary. Sign up here.

January Wellness Webinar with Donna Deluca

Cancer patients face exceptional psychological stresses. Medical situations can generate fear and sadness, anxiety, and depression. Medications and/or treatments can exacerbate emotional states. On top of that, they may face ongoing isolation as a result of compromised immune system health. The goal of "Qigong for Mental Health" is to provide users with a holistic self-care practice that can help balance the mind and body. Be prepared for gentle movement, breathing, and mindfulness techniques. Sign up here.