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.

"Life is about friends, not just health. IWMF is both." -Lisa B.

- Special Announcements -

Story of Hope Update

Peter DeNardis: There's Hope After All

"As I stated in 2018, there is LIFE, and I’d like to add, now more than ever, there’s HOPE!"

World Cancer Day is on February 4th

World Cancer Day is an international day observed every February 4th to raise awareness about cancer, encourage its prevention, and mobilize action to address the global cancer epidemic. The day is led by the Union for International Cancer Control (UICC) and was established in the year 2000. 

The World Cancer Day theme 2025-2027, “United by Unique” places people at the center of care and explores new ways of making a difference. Learn more and get involved here.

2024 European WM Patient Forum Videos Available

🎥 Ready to watch now!

The 2024 European WM Patient Forum videos are now LIVE and available to watch on the IWMF YouTube channel!

🌍 Whether you joined us in person or missed the event, you can now explore the informative sessions, expert insights, and empowering stories shared at the forum.

The sessions included current treatments and ongoing research, clinical trials perspectives, and much more!

📺 Click here to watch, and learn about our 2025 event here.

WM-VOICE Survey Deadline EXTENDED!

Please help to ensure your WM Voice is heard by February 28th, 2025! We are very close to reaching our goal of 188 voices in each country below (only 56 more voices needed in Australia, so close!), and the more data the better! Will you please take 30 minutes over the weekend to help with WM research to share your preferences on treatment options? It is completely anonymous! By taking part, you can help WM patients receive better treatments in the future.

SURVEY LINKS

• 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

Study details:

The WM-VOICE study is scientific research about WM. The study focuses on what patients with Waldenström value most in their treatment. Researchers from the hematology department of Amsterdam UMC are conducting this study, in collaboration with Waldenström experts and patient organizations from the United Kingdom, the United States of America, Australia, Canada, and the Netherlands. The study is funded by IWMF. This study is non-commercial. No pharmaceutical companies are involved in this study.

Can I participate in the study?

It does not matter how many treatments for WM you have had. Individuals with WM who have not undergone treatment, can also take part.

Let's raise our voices in unison to support WM research!

Let's Work Together to Accelerate the Cure!

Accelerate the Cure is our $31 million USD effort, over five years, to find a cure and support those with WM and their caregivers. Global researchers have a new set of WM research targets, and they are afire with excitement. We believe we can find that cure, and we hope 100% of our WM family will contribute.

IWMF has three Research Opportunity Funds: One for global research, one to accelerate clinical trials, and one that funds the next generation of researchers. A fourth fund ensures that IWMF continues to advance life-changing education and support programs while we push for that cure. Visit the Ways to Give page on our website to learn more about the Opportunity Funds and other ways to support this effort.

- Education-

Lymphoma Research Foundation Webinar

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

Upcoming Webinar on Personalized Medicine

January 29th, 2025

9:00AM EST

From World Patients Alliance:

Personalized Medicine holds the potential to transform patient care by delivering treatments tailored to individual needs—improving outcomes and ensuring no patient is left behind. This webinar will explore how patients and patient organizations can play a key role in making personalized healthcare accessible to all.

What to Expect:

• Learn about the basics of personalized medicine and its global impact.
• Hear inspiring stories and practical examples of advocacy from experts and patient leaders.
• Discover actionable steps to support equitable access to precision medicine in your community.

Register here for the session.

Leukemia & Lymphoma Webinar:

The Mediterranean Diet for Cancer Survivors

The Mediterranean Diet for Cancer Survivors

Thursday, January 30^th

12:00 - 2:00 pm ET

This chat will be moderated by an LLS registered dietitian, who has expertise in oncology nutrition. They will be chatting about the Mediterranean Diet for cancer survivors, including:

• A description of The Mediterranean Diet
• The research about cancer survivorship and The Mediterranean Diet
• Steps to ease into Mediterranean eating
• Resources to learn more about this eating plan
• And more!

Join to learn, ask questions, and chat with one another!

Register here. You will receive a reminder email on January 30^th, before the chat begins, with a link to participate.

CancerCare Webinar on February 4th

Clinical Trials: How They Transform the Treatment of Cancer

Tuesday, February 4, 2025

1:30 – 2:30 pm, ET

Registrants can listen in live over the phone or online as a webcast.

Topics Covered

• Overview of Clinical Trials & Why They are Important
• Understanding Your Treatment Options, Including Clinical Trials
• Concerns About Participating in Clinical Trials
• Types of Clinical Trials
• What Happens in a Clinical Trial?
• The Meaning of Informed Consent
• Benefits & Risks of Participation
• How & Where Clinical Trials are Conducted
• How to Participate in Clinical Trials
• Specific Questions to Ask Your Health Care Team About Clinical Trial Participation
• Guidelines for Preparing for Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes
• Accessing Resources for Clinical Trials
• Questions for Our Panel of Experts

Register Here

Whole Person Cancer Care: Living Well with WM

Presented by Dr. Wayne Jonas on February 20th

Whole person cancer care involves learning what matters most to patients and engaging them in health and wellness behaviors that influence their quality of life and longevity as the cancer is treated. In this webinar, we’ll define whole person cancer care and demonstrate its potential as an advanced oncology approach. We summarize the science behind whole person care and the evidence that supports its application. With case studies and data, we will describe how it’s being done from small clinics to large institutions. Finally, we will introduce some tools and resources available that WM oncologists, WM cancer care teams, and people with WM can incorporate into their own healing journey.

All are welcome: WM friends, staff, and caregivers are invited!

Bio: Wayne Jonas, MD, is a widely published investigator, practicing family physician, and professor of medicine at Georgetown University and at Uniformed Services University of Health Sciences. He serves as the President of Healing Works Foundation. His newest book is Healing and Cancer: A Guide to Whole Person Care, co-authored with Alyssa McManamon, MD, released April 23, 2024 by Rodin Books.  

Young WM Affinity Group Meeting

Tuesday, January 28th, at 8:00PM US ET

The International Young WM Affinity 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

IWMF Military Veterans Affinity Group

Thursday, February 6th, at 2:00PM US ET

The IWMF is proud to be hosting an affinity group for WM community members who are military veterans. The meeting will be held on Thursday, February 6^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 hosted by Ray V., IWMF Volunteer and Vietnam Veteran. 

Register HERE for the meeting.

WM People of Color Affinity Group

February 7th at 1:00PM ET

The WM People of Color Affinity 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 -

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.

Fitness Essentials for WM with Mark Wild

Get your body moving to improve quality of life - at any stage of your WM journey. Join award-winning cancer rehabilitation expert Mark Wild for a carefully constructed, moderate intensity fitness class that creates change with kindness. Improve your muscles, movement, and mind! This 45-minute sequence of standing bodyweight exercises helps manage symptoms such as peripheral neuropathy, swollen glands, fatigue, weakness, and poor concentration. Wear comfortable clothing, bring water and a chair for optional added support.

Sign up here or go to IWMF Wellness Calendar on the IWMF Website 

Bio: Mark Wild has over 15 years’ worth of experience in helping patients to deal with a diagnosis as positively as possible. His comprehensive and considerate exercise method is a reflection of the detailed knowledge and understanding he’s gained throughout his career, working directly with those affected by non-Hodgkin lymphoma. In addition, Mark recently presented at the European Patient Forum on Exercise for WM.

Get the IWMF Wellness Newsletter

“I love reading the wellness newsletters because there's content between articles. It's like a mini-webinar rather than just a newsletter. But I realize it takes a lot of time to put together a newsletter like this. So I won't suggest a weekly newsletter on different topics. But I'd love it!” - WM Wellness Community Member

Get the Zoom links to every wellness class in one spot, meet featured members of the wellness community, and learn the latest on how integrative therapies can help you navigate your journey. Sign up here - one email per month only! 

Introducing the IWMF Wellness Calendar

The new calendar is available on the IWMF website. Check it out! “I get energized by physically participating, I find peace by meditating, I find that I can deal with anything because I’m encouraged by others that are also battling our cancer.” 

- WM Wellness Community Member

Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on "download photos" at the top to view all content. For more information, email info@IWMF.com or visit www.IWMF.com