The Waldenstrom's Weekly

June 21, 2024

Volume 4, Issue 25

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 -

Newton Guerin and Beth Mitchell attended the European Hematology Association (EHA) conference in Madrid last week, connecting with the global community of healthcare professionals, patient advocates, and pharmaceutical companies.

Weekend update! Our most popular 2024 Ed Forum videos are now available with captions.

- Research Study Spotlight-

Natural History of WM Study

The National Institutes of Health (NIH) is recruiting WM patients for their Natural History Study of WM. A Natural History study is a longitudinal study looking at the course of the disease from initial diagnosis to progression and treatment, and relapsing after treatment. This study Is observational and does not provide treatment. Patients are followed in conjunction with their local hematology/oncology provider.

The purpose of the Natural History study is to collect research samples to investigate the molecular basis and clinical development of WM (and other B-cell lymphomas) to better understand the pathogenesis that can lead to discovery, or to validate new, therapeutic agents.

Patients must travel to NIH for appointments. However, the frequency of visits required for the study is flexible and can be tailored to each participant's needs. Travel reimbursements may be available to patients who live more than 30 miles from NIH. The consent form is available for your review HERE.

For further information or to enroll, contact Rachel Adams, Research Nurse Specialist, at 301-412-3920 or email rachel.adams@nih.gov.

- Education -

Next week!

Want to find out how reiki can support your cancer journey? Join Usui Reiki Master Teacher Sharon Rivet to learn more about this holistic healing system. Reiki can help manage pain and stress, strengthen immune system function, and energize the whole body. With Sharon’s guidance, we’ll cultivate a deeper awareness of our own energy through a few reiki exercises selected especially for the WM community. Come with all your reiki questions for Sharon, who was diagnosed with WM in 2018.

Triage Cancer: Caregiving Webinar

June 27th, from 1:00PM - 2:30PM ET

Learn about the rights of caregivers at work, how to replace lost wages while acting as a caregiver, and practical tips to support caregivers. Triage Cancer will also talk about community resources available to caregivers. Register Here.

Mark your Calendars! Webinar on Watch & Wait

Join our friends at The Patient Story for an essential webinar featuring two experts in the field of cancer care, Dr. Jonas Paludo from Mayo Clinic, Rochester MN, and Dr. Shayna Sarosiek from Dana-Farber Cancer Institute, Boston, MA. Dive deep into the crucial topics of “Watch and Wait” and mental health, gaining insights that could transform your understanding and approach to cancer treatment.



• Understanding Waldenstrom Macroglobulinemia
• Watch and Wait Is an Active Process
• The Importance of Mental Health
• Current Treatments for WM
• Clinical Trials Landscape
• Valuable Takeaways from the Experts

WM Military Veteran Support Group on June 28th

The IWMF is proud to be hosting a discussion group for WM community members who are military veterans. The meeting will be held on Friday, June 28^th, 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.

In Case You Missed It: Chair Yoga with More Flow!

“Thank you for this session. I feel energized!” - Sarah S. 

“That was lovely! Wonderful calm motion to start the day! - Anne M.

Partner Spotlight: Leukemia & Lymphoma Society

Clinical Trial Nurse Navigator Program

The Leukemia & Lymphoma Society’s Clinical Trial Support Center (CTSC) Nurse Navigators are ready to help patients find and answer questions about clinical trials at no cost. 

Patients and caregivers have direct access to their CTSC Nurse Navigator throughout the trial search and enrollment process, and while patients are in the trials.

Nurse Navigators are specially trained not only in blood cancers and clinical trials, but also patient education and support, and they work in collaboration with a patient’s healthcare team.

WM Community Corner

Mary Waleski, WM community member, attended the Mid-Atlantic Lymphoma Research Foundation (LRF) Workshop last weekend in Washington, DC on behalf of the IWMF. Thanks for representing us Mary!

New Products in the IWMF Shop!

Are you WaldenSTRONG? Check out our latest logo and new products listed in the IWMF Shop! Be sure to send a picture of you sporting your IWMF swag to office@iwmf.com to be included in a newsletter.

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 info@IWMF.com or visit www.IWMF.com