The Waldenstrom's Weekly

November 10, 2023

Volume 3, Issue 42

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 -

IWMF Board Meets to Discuss Plans for 2024

IWMF Board and Staff photo from the Board meeting in Charleston, SC

IWMF Board and Staff met in Charleston, SC, on November 4-5 to continue their work on behalf of the global WM community. Their agenda included a number of priority information, education and support programs, including expansion of our Global Patient Initiative, professional education for healthcare providers and wellness programs for patients and caregivers.

#GivingTuesday is November 28th

Save the Date! Giving Tuesday is November 28th. More details to come!

European WM Patient Ed Forum

Highlights Reel AND Recordings Available!

click here to watch the video

Kick up your feet with a beverage or snack this weekend and enjoy the highlights reel AND recordings from the European WM Patient Ed Forum! Recordings are now available on our YouTube Channel HERE of both events in Amsterdam, NL and Birmingham, UK.


With informative sessions and top-notch speakers, these recordings are sure to get you up to speed on everything WM. For the panel and Q&A recordings, check out the description area of the video for a time stamp of questions asked, so you can jump right to the question you wish to hear about. We had a record-breaking panel for the Ask the Healthcare Professional session with 9 panelists! Get a front row seat at home to witness this milestone inaugural event.


Thanks to WMUK for their collaboration to make this impactful meeting possible, and to all who attended live or virtually! 

- Education -


We are waldenstrong, strength training with Sharon November 10th at 1PM Eastern

Join Sharon Piotrowski TODAY at 1pm EST for a 30-min Strength Training for All Levels workout. We’ll watch the pre-recorded video together, and stick around for 15 minutes for Q&A with Sharon LIVE. You will receive the recording after our live Zoom watch party! Email Ann at [email protected]  if you're interested in receiving the Zoom link (if you registered for the webinar, you’re already on the list.)

Registration Open!

Coping with Fatigue and Sleep Disturbance

November 30th from 1-2:30PM US EST

what does fatigue look like and feel like for you? Coping with Fatigue and Sleep Disturbance on November 30th at 1:00PM Eastern Time

Find out how fatigue can look and feel different in the context of cancer, and learn strategies to help boost your energy and decrease fatigue. Come prepared to do a short movement practice to manage fatigue. We’ll also define which common behaviors can get in the way of a good night’s sleep, and learn how to create an environment that invites sleep. You’ll leave the webinar with new tools to improve sleep quality, combat fatigue, and thus improve your overall quality of life while living with Waldenstrom’s. Come ready to have all your sleep and fatigue questions answered!

About the Presenters


Rina S. Fox, PhD, MPH is a licensed clinical psychologist and an Assistant Professor at the University of Arizona College of Nursing, where she studies ways to help improve quality of life and decrease symptoms for adults facing cancer and other chronic illnesses. She is particularly interested in identifying ways that cancer survivors can sleep better and feel less fatigued by changing the way they think and act.

Dr. Alexandria Muench, PsyD is a licensed clinical psychologist and Research Associate within the Behavioral Sleep Medicine Program at the University of Pennsylvania, where she studies ways to treat insomnia and fatigue in cancer. Dr. Muench’s work has been funded by the National Institutes of Health (National Cancer Institute). She is also the author/co-author of multiple publications in the areas of insomnia and Behavioral Sleep Medicine and regularly provides lectures and trainings on these topics.

Register Here

Patient Access Network Webinar

PAN foundation how medicare part D is changing in 2024

From Patient Access Network (PAN):

PAN is hosting a free webinar on November 29 at 1 p.m. ET to explain how Medicare Part D will change in 2024 and how those changes may impact your out-of-pocket costs. We’ll also talk about how these changes will impact PAN grants. (Don’t worry—we’ll still be here to provide financial support!)

Register Here

Save the Date! CancerCare Workshop

Coping with Cancer During the Holidays

Wednesday, December 6, 1:30-2:30PM US ET

cancercare coping circle workshop


CancerCare is offering a free 60-minute workshop available to cancer patients, caregivers and bereaved individuals to learn coping skills during the holidays. The workshop will help participants learn ways to manage feelings of stress and anxiety, while still creating meaningful ways to celebrate. This workshop will provide a group mindfulness exercise to practice this skill together. Participants will have the opportunity to ask questions and engage in an open discussion with an oncology social worker.

Register Here
- Support -

International Young WM Support Group Meeting

Monday, November 13th at 8:00PM US ET

you are not alone

The International Young WM Support Group will be having a meeting THIS Monday 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.

Monday, November 13th

8:00PM - 9:00PM U.S. ET

To join the mailing list for this group, contact Michelle:  [email protected]

NEW Specialty Support Group Meeting

WM and SMZL: Living with & managing TWO rare disease/diagnoses

CALLING ALL WM patients and caregivers who have WM and Splenic Marginal Zone Lymphoma (SMZL)!

IWMF Specialty Support Group “WM and SMZL: Living with & managing two rare diseases/diagnoses.” 


 On Wednesday, November 29th at 8:00PM US eastern time, Join the WM & SMZL Support Group for a sharing session. Bring your stories and questions to share with the group for approximately one hour. The group leader will be Tom:

"As I exhibit symptoms of both WM & SMZL and a bone marrow biopsy cannot pinpoint the disease type, I’m striving to provide a forum where patients experiencing a similar WM / SMZL dual diagnosis can share ideas and help each other navigate treatment options."

To join the group list, contact Michelle: [email protected].

Bing-Neel Syndrome Support Group

Bing-neel graphic

From Bing-Neel Group Co-Leader, Julie Davidson:


"We are going to try something a little different for the fall Bing- Neel Support Group meeting on Sunday, November 19 at 1 PM and 7 PM (EST-US). There will be a couple of our own members presenting their stories. Then there will be a fun participation presentation by Joseph Hawthorne ACSM-CPT, AKC, RBT, CSC, Owner of Block Fitness ("

November 19th at 1PM ET
November 19th at 7PM ET

November WM Wellness calendar

Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on downloading photos at the top to view all content. For more information, email [email protected] or visit

IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | [email protected] | 1-941-927-4963
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