28th Annual IWMF Hybrid Educational Forum

The 28th Annual IWMF Educational Forum will provide a unique opportunity to learn and connect with the global WM Community. The 2023 Ed Forum brings WM specialists, clinicians, researchers, patients, and caregivers together. Our weekend program features pertinent and timely information related to symptoms and complications of WM, current treatment options, new therapies, and life topics that align with this year’s Ed Forum theme:  Learn, Grow, Empower. The program concludes with the ever-popular “Ask the Doctors” question-and-answer session.

If you have any questions about registering for this year’s Educational Forum, please contact the IWMF home office at 941-927-4963.

IWMF Ed Forum Full Agenda

IWMF ED FORUM DAY ONE

CONCURRENT GENERAL SESSIONS:

9:45 – 10:45 AM CT

WM Basic Training – Q&A

Dr. Andrew Branagan, Massachusetts General Hospital Cancer Center

This simple explanation of diagnosis, symptoms, and treatment guidelines will provide newly diagnosed patients with the basics of WM and seasoned WMers with a valuable refresher course.

9:45 – 10:45 AM CT

Experienced: Living Longer with WM – Q&A

Dr. Prashant Kapoor, Mayo Clinic

Review the scientific research and clinical trials that led to improved outcomes and longer survival for WMers, as well as gain an understanding of the support dynamics and resources that are contributing to living better with Waldenstrom’s macroglobulinemia (WM.)

BREAK

11:00 AM – 12:00 PM CT

Current Treatment Options and New Therapies on the Horizon – Q&A

Dr. Jonas Paludo, Mayo Clinic

A concise review of current treatments, the latest information about potential new treatments, and how participation in clinical trials help move novel therapies along the drug pipeline.

LUNCH

GENERAL SESSION

1:15 PM – 2:15 PM CT

Infection Prevention and the IVIG, COVID Balancing Act – Q&A

Dr. Andrew Branagan, Massachusetts General Hospital Cancer Center

Infections are the #1 cause of complications in blood cancers.  Learn tips to prevent infection and explore strategies (e.g., vaccination, IVIg, etc.) to strengthen the immune system.

HOSTED NETWORK GROUPS (Pre-registration required)

2:15 PM – 3:15 PM CT

I Just Want to Meet Other WM Patients

Sharon Rivet (IWMF Ed Forum Planning Committee Member)

Gathering with others who have this rare disease is an affirming experience.  Join us for an informal chat with WMers you’ve “met” through IWMF-Connect, Facebook Support Group, LIFELINE, Torch magazine or Waldenstrom’s Weekly newsletter.  Share your experience and learn from others who have walked in your shoes.

Young WM:  Under 50?

Julie Richardson (IWMF Board Member)

Fewer than 10% of WM patients are diagnosed younger than 50 years of age.  If you belong to this very rare group, join us for a discussion of relevant topics, such as how to talk to young children about cancer, sexual health, pregnancy, working during treatments, disability, life expectancy, etc.

Caregivers:  You Are Not Alone

Jennifer Bires, MSW, LCSW, OSW, Inova Schar Cancer Institute

Many family members serve as caregivers and the WM journey may be fraught with medical, emotional, and logistical challenges.  Learn tips to advocate for your loved one; how to juggle caretaker tasks; self-care strategies; ways to protect your mental health; and long-distance caregiving.

Rare Complications: Wacky WM

Dr. Shirley D’Sa, University of London Hospitals NHS Trust

We’re all unique! Discuss uncommon WM complications including amyloidosis, Bing-Neel syndrome, cold agglutinin disease (CAD), cryoglobulinemia, extramedullary lesions, kidney disease, lymphadenopathy (bulky disease), lytic lesions, pleural effusion, secondary cancer, and transformation to a more aggressive lymphoma.

Sound Meditation

Ann MacMullan, C-IAYT, WM Community Yoga Therapist

Relax to the sound of authentic Himalayan singing bowls, with gentle verbal guidance to further calm the nervous system.  Research studies have shown that sound meditation with singing bowls reduced tension and increased feelings of spiritual well-being in its participants, and could be useful for those experiencing fatigue, chronic stress, depression, or anxiety.

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Virtual Community Conversation in Networking Lounge

Hosts: Lisa Wise and Suzie Shook

Attendees will login to Notified platform and click “Networking Lounge”.

6:30 – 8:30 PM CT

Welcome Dinner and Reception – Judith May Volunteer Award Presentation

IWMF ED FORUM DAY TWO

Morning Leisure Walk or Yoga
Breakfast

9:00 – 9:45 AM CT

Welcome and Ben Rude Heritage Society Recognition

Laurie Rude-Betts and Newton Guerin

GENERAL SESSIONS

9:45 – 10:45 AM CT

Overview of the IWMF Global Patient Initiative

Carl Harrington, Chair, Global Patient Initiative and IWMF President Emeritus

Great Debate in WM:  BTKi vs. Benda-R as Standard Frontline Induction Regimen

Drs. Stephen Ansell, Mayo Clinic and Jeffrey Matous, Colorado Blood Cancer Institute

As you listen to WM specialists make a case for the best initial treatments, you will learn the drugs’ pros/cons and see the decision-making process that is involved in choosing the best option for an individual patient.

IWMF 2023 Research Grants Report

Drs. Stephen Ansell, Mayo Clinic

11:00 AM – 12:00 PM CT

Managing Complications Secondary to WM – Q&A

Dr. Stephen Ansell, Mayo Clinic

One size does not fit all with WM!  Learn about different WM-related secondary complications, treatment options, and management strategies. This discussion addresses Bing-Neel, Pleural effusions, and extramedullary and non-WM things like amyloidosis, cryoglobulinemia.

LUNCH

1:15 PM – 2:15 PM CT

WM Survivorship: Emotional and Psychological with Q&A

Jennifer Bires, MSW, LCSW, OSW, Inova Schar Cancer Institute

A rare disease diagnosis is often accompanied by an array of physiological and psychological challenges for both patients and caregivers.  An expert, who supports people with complex illnesses, will share firsthand experiences, strategies for coping and skills to help people with rare conditions live meaningful and impactful lives.

2:15 PM – 3:15 PM CT

Highlights and Consensus Panel Reports from IWWM 11  with Q&A

Dr. Steven Treon, Dana-Farber Cancer Institute

Dr. Treon will discuss 7 consensus panel reports from IWWM-11 covering guidelines for the diagnosis, treatment and responsive assessment of WM.

ADJORN WITH OPTIONS:

Private one-hour Busch Stadium Tour, Leisure Walk, Yoga

DINNER ON YOUR OWN

IWMF ED FORUM DAY THREE

BREAKOUT SESSIONS (Pre-registration Required):

9:00 AM – 10:00 AM CT

Peripheral Neuropathy: Strength/Balance

Dr. Shirley D’Sa, University of London Hospitals NHS Trust

This session addresses the differences between WM-caused and treatment-caused peripheral neuropathy (PN).  Learn about medication management and non- medication strategies, such as orthotics, balance training, acupuncture, occupational and recreational rehab, exercise, special shoes, compression socks, TENS and Scrambler therapy.

WM & Fatigue: Sleepy in St. Louis

Cathy Skinner, CEO, The Art of Well

A discussion on cancer-related fatigue and its impact on quality of life, the contributing factors that can add to fatigue, and the ways in which fatigue can be managed.  An overview of cancer-related fatigue (CRF) presented in a way that is meaningful to WM patients.

Nutrition: A Fresh Approach

Margaret Martin, RD, LDN, MS, CDCES, The Leukemia & Lymphoma Society

WM specialists encourage their patients to follow a healthy and balanced diet. Learn about food challenges, healthy eating, and dietary adjustments to help optimize health during your WM journey.

Patient-Doctor Shared Decision-Making

Dr. Shayna Sarosiek, Dana-Farber Cancer Institute

WM represents less than 1% of cancers seen by the average hematologist/oncologist.  So, many patients may not be up to date with WM management.  By getting involved in the decision-making process with their doctors, patients are more likely to receive better health outcomes.  Learn how to be a well-informed, active self-manager of your medical care by seeking out the best consultants, questioning/verifying what they say, and monitoring/interpreting diagnostic tests and therapeutic recommendations.

BREAK AND HOTEL CHECKOUT

GENERAL SESSION:

10:30 AM – 12:00 PM CT

Ask the Doctors Live – Q&A Panel

Drs. Tom Hoffmann, Jeffrey Matous, Shayna Sarosiek, Christian Buske and Shirley D’Sa

A panel of leading WM specialists answer, and sometimes debate, questions about WM from the Ed Forum audience.

CLOSING REMARKS:

Newton Guerin, IWMF President & CEO