The Waldenstrom's Weekly

January 12, 2024

Volume 4, Issue 2

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 Announcement -

IWMF Seeking Fundraising Volunteers

The IWMF is currently seeking individuals with experience/expertise in non-profit fundraising.

Do you have professional fundraising experience or significant experience as a volunteer in fundraising? Or do you know anyone with that professional background? Please forward all suggestions to Newton Guerin (IWMF CEO) at nguerin@iwmf.com and copy Carl Harrington (IWMF Vice Chair, Fundraising) at carlh@comcast.net.

Thank you for your support of the IWMF!

- Research -

New Development in WM Treatment

Cellectar Biosciences shared positive clinical trial results in the treatment of Waldenstrom’s Macroglobulinemia (WM). The CLOVER-WaM clinical trial of Iopofosine I 131 has achieved positive topline results, meeting its primary endpoint and requiring 4 doses completed in 71 days. Cellectar is on track to submit the new therapy for FDA Approval. For more detailed information on this development, please click here.

- IWMF Educational Forum -

Come and Immerse, Explore, and Soar at the 29^th Annual IWMF Ed Forum. Preview the dynamic agenda of topics, workshops, and expert faculty to help you stay on top of the latest news regarding current and upcoming treatments for WM, and how best to live with the disease.

Your $250 registration fee includes access to all live general sessions, networking breakouts, daily breakfasts, Friday and Saturday lunch, refreshment breaks, and the welcome reception/dinner on Friday.



Register early and sign up for your preferred breakouts, as space is limited and available on a first-come, first-served basis. 

IWMF Alaska Cruise - Deadline is January 31st!

Are you dreaming of an unforgettable adventure in Alaska? Now is the time to join fellow WM community members and make it a reality! This offer is only available until January 31st, so why wait? Book now!

- Education -

IWMF Wellness Educate & Empower Series 

Do you experience pins and needles, pain, numbness or weakness in your feet, legs, or hands because of peripheral neuropathy? Join exercise physiologist Nancy Campbell to learn how simple exercises can help manage the challenges of peripheral neuropathy (PN). We will discuss different treatment strategies, such as improving blood flow and movement, and learn how to incorporate these into our daily lives. Come ready to both learn and do – wear comfortable clothing that you can move in and bring water to stay hydrated. Register now to join our Zoom Educate and Empower monthly wellness webinar!

Lymphoma Research Foundation Webinar

The Lymphoma Research Foundation's (LRF) Update on Lymphoma from the 2023 American Society of Hematology (ASH) Annual Meeting webinar provides important information on lymphoma and new research from the 2023 ASH meeting.

Date and Time:

Monday, January 29, 2024

12:30PM Eastern Time

Program Topics:

• Overview of Lymphomas

• New Research Presented at ASH

• B-cell Non-Hodgkin Lymphomas and Chronic Lymphocytic Leukemia
• Hodgkin Lymphoma and Pediatric Lymphomas
• T-cell Non-Hodgkin Lymphomas

• The Role of Clinical Trials

• Questions for Panel of Experts

Speaking Faculty:

John P. Leonard, MD

New York Presbyterian Hospital / Weill Cornell Medicine

Jamie E. Flerlage, MD, MS

University of Rochester

Neha Mehta-Shah, MD, MSCI

Washington University in St. Louis

The April issue of the IWMF Torch will have reflections on the ASH sessions and a summary of WM-specific presentations by IWMF representatives who were in attendance.

Yoga Nidra - Sunday, January 14th at 4:00PM EST

“This session provided me with a respite from fatigue. Thank you.”

Yoga Nidra has been shown to decrease stress levels, improve sleep quality, elevate well-being, and increase the mindfulness of the participants. Our anecdotal evidence supports that it could be beneficial for fatigue as well! Practice this guided relaxation while lying down on a bed or on a couch. Reach out to anngrace@iwmf.com to receive our Zoom invite and follow-up recordings. 

The Leukemia & Lymphoma Society (LLS):

Nutrition Education Services Center

Schedule a free one-on-one nutrition consultation with a registered dietitian.

Patients and their caregivers may receive a free one-on-one phone consultation with one of LLS’s registered dietitians who have expertise in oncology nutrition.

Eating well helps people with cancer feel better, stay stronger, and better tolerate the side effects of treatment. Good nutrition also helps the body replace blood cells and healthy tissues that are damaged as a result of cancer treatment.

Click Here to Schedule a Consult

Or call 877-467-1936

Evening appointments are available!

Telephone consultations are available to patients and caregivers in the United States and Canada only. If you live outside the United States or Canada, email Nutrition@LLS.org to connect with a dietitian via email.

What to Expect from a Nutrition Consultation:

Consultations last approximately 30 minutes. By speaking to a registered dietitian, you can learn

• Strategies to improve nutrition and side effects
• Tips for meal planning and grocery shopping
• How to care for a loved one during cancer treatment
• Answers to your nutrition questions
• Questions to ask your healthcare team 
•  Additional nutrition resources online and in your area

The nutrition consultations are intended for general educational purposes. Due to the nature of the consults, these services are not available:

• Recommendations for dietary supplements and herbal preparations
• Prescription diet orders or restrictive diets
• Nutrition therapy by tube or IV
• Free meal delivery

Young WM Support Group Meeting

January 20th at 12:00 Noon U.S. Eastern Time

The International Young WM Support Group will be having a meeting this month 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.

Saturday, January 20th

12:00PM - 1:00PM U.S. ET

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

NEW CLASS! T’ai Chi & Qi Gong 

Tuesday, February 6th at 2:00PM EST

Get on the mailing list now for this exciting new offering! Join Rami Rones to safely explore the ancient mind-body therapies of T’ai Chi and Qi Gong. The meditative state achieved during practice can help reduce anxiety and stress while boosting your mood, immune system, and energy levels. Slow, low-impact movements can increase muscle mass and bone density, ease aches and pains, gently stretch muscles, and improve your balance. Reach out to Ann Grace if you’d like to be a part of this powerful mind-body practice: anngrace@iwmf.com.

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