The Waldenstrom's Weekly

HAPPY NEW YEAR FROM IWMF!

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 -

Athens Awaits YOU in April!

Join us in Athens this spring!

The 2026 European Educational Forum will be held in Athens, Greece on Friday, April 24, 2026 — bringing together people living with Waldenstrom macroglobulinemia (WM) and those who support them. Join us in this historic city to:

Learn the latest in WM research and care
Connect with others who understand the journey
Engage with 70+ experts from the European Consortium of Waldenström Macroglobulinemia

Athens awaits—don’t miss this inspiring opportunity to learn, share, and explore!

Get Ready to Connect in Columbus

Registration is opening soon for our US Educational Forum!

On May 1-3, Join the 2026 IWMF Educational Forum in Columbus, Ohio. Patients, caregivers, healthcare providers, and researchers will come together to learn, connect, and find hope.

Please watch for an email from events@iwmf.com and check the IWMF website for the latest updates as we prepare to connect in Columbus!

Help Us Shape IWMF Communications for 2026!

A huge thank you to the nearly 400 community members who have already weighed in on our 2026 Communications Survey!! We are thrilled with the response so far, but we want to make sure everyone is heard.

Our goal is simple: to provide news and information that truly serves you. Whether it’s our printed newsletters or our digital updates, we want to ensure our content hits the mark.

Got 5–10 minutes? Please share your candid, anonymous feedback here today. Your insights are the blueprint for everything we create next!

IWMF Story of Hope: Timothy Salz

Turning Diagnosis into Harmony

"My Waldenstrom’s macroglobulinemia (WM) story officially began in January of 2018, two days after my 70th birthday. Happy Birthday, Tim! Unofficially, I believe it began many years, possibly even several decades before that."

Read Tim's Story Here

WM Community Corner

Dr. Hanley (second from right) in 2016

Dr. Maureen Hanley, former IWMF LIFELINE volunteer and IWMF's go to source for WM & the eye, was posthumously named as one of two 2025 Distinguished Alumn i by New England College of Optometry.

We will forever be grateful for Dr. Hanley's contributions to the WM community.

- Education -

WMFC Ed Forum Recordings Available!

IWMF’s Global Partner Spotlight: WMFC

The Mission of the WMFC (Waldenstrom’s Macroglobulinemia Foundation of Canada) is to support Canadians with WM, and their families, by offering a range of services that can enhance quality of life for those with WM and ultimately discover a cure. The services include:

Education
Personal contact and support allowing WM patients to navigate the rare WM world and medical treatment options
Financial grants to support critical research in finding a cure for WM
Links to the medical community and pursuing advocacy through local partnerships.

The WMFC is the only organization in Canada to focus exclusively on WM and its patients. Learn more about WMFC, and watch their newly released 2025 Ed Forum video recordings at https://www.wmfc.ca/

Hope Connections for Cancer Support Programs

Power Up with Plants: Everyday Nutrition During and After a Cancer Diagnosis

Wednesday, January 14

6:30-7:30 pm, via Zoom

Join a registered dietitian to explore how plant-forward eating can support your strength, energy, and overall well-being during and after cancer treatment.

Learn practical tips, simple meal ideas, and evidence-based strategies to nourish your body every day.

Advancing Hope: Understanding Clinical Trials and Their Benefits

Wednesday, January 21

6:30-7:30 pm, via Zoom

Learn what clinical trials are, how they work, and the potential benefits they offer for patients and future treatments.

Participants will explore key concepts such as trial phases, safety protocols, informed consent, and ethical oversight. The program also explains the real-world benefits of clinical research.

To register for these upcoming sessions, contact Stephanie at stephanie@hopeconnectionsforcancer.org

Webinar from Lymphoma Research Foundation

Highlights from the 2025 American Society of Hematology (ASH) Annual Meeting: B-Cell Non-Hodgkin Lymphomas

Date: Thursday, January 29, 2026 Time: 1:00 – 2:00 pm ET

Program Overview

The Role of Clinical Trials in B-Cell Lymphoma Care
What is the ASH Annual Meeting?
Latest Updates in B-Cell Non-Hodgkin Lymphoma Research
Trending Topics in Hematology

Presenter:

Sonali M. Smith, MD

University of Chicago

Scientific Advisory Board

- Research -

The Future of BTK Therapy: Meet APG-3288

Exciting news! Ascentage Pharma's next-gen BTK degrader, APG-3288, has received investigational new drug (IND) U.S. FDA clearance to begin Phase 1 clinical trials for various relapsed/refractory B-cell malignancies!

This novel PROTAC therapy is designed to completely degrade the problematic BTK protein, offering a potential solution to resistance issues often seen with current BTK inhibitors in conditions like lymphoma, CLL, and even Waldenstrom macroglobulinemia.

A significant stride in targeted cancer therapy and a major step forward in the fight against these diseases!

- Support -

Young WM Affinity Group Meeting on January 27

The International Young WM Affinity Group is having a meeting this month for patients and caregivers in the pre-retirement age. Attendees will join Co-Leaders Ryan, Deborah, and Jason on Zoom for a support and sharing session, which will last approximately one hour.

Tuesday, January 27

8:00PM - 9:00 pm ET

To join the mailing list for this group and receive the Zoom link, contact office@iwmf.com.

WM People of Color Affinity Group on February 6

The WM People of Color Affinity Group will be meeting on Friday, February 6 at 1:00 pm eastern time.

WM Specialist Dr. Christopher Dittus, DO, MPH (University of North Carolina) will meet with the group as a guest speaker.

For the Zoom link, contact office@iwmf.com

WM LGBTQ+ Affinity Group Meeting in February

The IWMF LGBTQ+ Affinity Group will have their next meeting on Saturday, February 21 at 2:00 pm eastern time.

Contact office@iwmf.com to be added to the mailing list.

Need Help Traveling to a Second Opinion?

IWMF is proud of our financial assistance program in partnership with The National Organization for Rare Disorders (NORD)!

To date, The IWMF Travel & Lodging (T&L) Assistance Program has provided over 40 individuals diagnosed with WM, or those being evaluated for the disease, with financial assistance related to second opinion or diagnosis confirmation appointments. With WM being a rare disease, having a second opinion with a WM specialist can be critical to confirm diagnosis and course of treatment.

The T&L Program also offers financial assistance for travel related to clinical trial eligibility screening or first clinical trial visit (not being paid for by the trial sponsor) up to the program's established financial limit.

Community members inside AND outside of the US may qualify. Apply today!

For further information or to apply, contact NORD Monday-Friday between 8:30AM - 6:00PM EDT at 203-308-5902 or IWMFTravel@rarediseases.org

Your Voice Matters:

Tell PAN Foundation How They’ve Helped You

Have you received a WM copay grant from the PAN Foundation? Our friends at PAN want to hear from you! Please consider sharing your story of how PAN's financial assistance, educational resources, or advocacy efforts have supported you and your WM journey.

Share Your Story with PAN Here

- Integrative Wellness -

Start the New Year with Wellness

Why not find out firsthand if integrating IWMF wellness practices into your overall health plan could help you manage symptoms and improve your quality of life? The IWMF Wellness Program has many free offerings to support your well-being, whether you’re a patient of caregiver. Check out the January Wellness Calendar for more information.

Thursday, January 22 at 12:00 pm ET

What if it works out? What if it’s all ok? What if something good happens, even with your WM diagnosis?

Meet Deborah Kelly, an incredible mother of 4, diagnosed with Waldenstrom Macroglobulinemia (WM) at just 37. She’ll share how life coaching continues to impact her WM journey, and how the tools Deborah uses for herself can help transform your mindset.

Join us to turn anxiety into action; go beyond surviving and learn to thrive while managing a WM diagnosis.

You must register to receive the follow-up email with the recording!

Deborah Kelly is a mom, wife, certified life coach, and personal trainer living and thriving with WM. Deborah made her WM diagnosis the starting point of a life focused on helping people adjust to the circumstances of their own lives.

Listen to WM News on the Go – January Wellness Edition!

For the new year, IWMF has expanded its integrative wellness schedule to include more frequent classes and new offerings! Recent survey data suggests that these practices significantly boost quality of life and reduce symptom severity for many participants. Beyond physical exercise, the January Wellness Newsletter provides resources like educational webinars and classes aimed at fostering a positive mindset and community connection.