The Waldenstrom's Weekly

April 26, 2024

Volume 4, Issue 17

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 -

Next Week is the Annual IWMF Ed Forum!

Have you registered for the Ed Forum yet? You don't want to miss it!

It's not too late to reserve your front-row seat, whether in person or virtually, for Ed Forum 2024. We have TOP WM speakers from the United States, United Kingdom, and Australia lined up to join us! Check out the agenda and register below!

For those attending in-person, our Renton Recreation Guide is full of fun ideas for exploring the Pacific Northwest.

For those who have registered, stay tuned for upcoming communications specific to the event. We look forward to seeing you next week!

Virtual Registration Here

Ask the Doctors Q&A Opportunity

Ask the Doctors Session- Submit your question!

Please submit your questions for the Ed Forum's "Ask the Doctors" live question and answer session. Questions will be accepted through Saturday, May 4, 12:00 PST.

Please ask questions that are general in nature and relatable to others.
Our WM expert physicians cannot address any questions about personal medical issues or offer personalized medical advice.

Don't miss this opportunity for WM experts to answer YOUR question! We apologize in advance for any question not addressed due to time constraints.

Submit YOUR Question

WM-NET Update

Thanks to the incredible generosity of our IWMF donor community, we are happy to announce that we met the $100,000 Hamberg Family WM-NET Challenge in just 10 days!

Over 30 physicians, WM researchers, pharma industry representatives and IWMF leaders met in New York City on April 18 – 19 to continue their work to expand cutting edge clinical trials to the WM community throughout the US. “Creating a U.S. based network of WM clinicians and researchers will facilitate a more rapid translation of trial and study results into practice, as well as bring clinical trials closer to patients,” said Dana-Farber’s Jorge Castillo, MD, who serves as faculty director of the network’s steering committee. “We are thrilled that IWMF is partnering with us to ensure we meet our ambitious goals. We’re hopeful this network will help optimize clinical trial design and foster academic discussion for the benefit of all patients facing this chronic disease.”

IWMF’s financial support of the WM-NET clinical trials initiative is vital in keeping this moving forward. Thank you again to the Hamberg Family for their very generous match gift and thank you to everyone for your support!

Advice from WM Experts for the Newly Diagnosed

IWMF: Experts answer "What advice would you give to someone newly diagnosed with WM?"

Our WM experts were asked, "What advice would you give to someone newly diagnosed with WM?"

Watch the video now where Dr. Jorge Castillo, Dr. Sheeba Thomas, the late Glenn Cantor, Dr. Stephen Ansell, and Dr. Monique Minnema answer this question and share their advice.

IWMF at ONS Congress in Washington, DC

Visit IWMF today and tomorrow at booth # 3047 at the ONS Congress, in Washington, DC, hosted by the Oncology Nurses Society (ONS) ONS is a professional organization representing 100,000 nurses and more than 35,000 members committed to promoting excellence in oncology nursing and the transformation of cancer care. In addition to strengthening relationships with ONS members and other organizations in attendance, IWMF is raising professional awareness of Waldenstrom’s by sharing resources such as IWMF's essential information for nurses and patients. Visit https://iwmf.com/publications/ for these resources and more, including videos.

Pictured is Cyndi Powers, IWMF Director, Conferences & Events

Lymphoma Coalition Global Patient Survey Results

A BIG THANK YOU to all WM community members around the world who took the time to complete the 2024 Global Patient Survey (GPS). The goal of the GPS is to gain a better understanding about what matters most to adult patients and caregivers. This survey is conducted by the Lymphoma Coalition every two years. Over the ten-week period this year, 1,212 WM community members were represented, 327 MORE responses than in 2022- INCREDIBLE! We will be sure to share Lymphoma Coalition's final report for 2024 once it is released.

- Research -

WhiMSICAL Investigators Need YOUR Help!

The WM Study In CARTWHEEL: WhiMSICAL registry investigators are seeking help from all WM patients globally to contribute their own data for an abstract for the major hematology conference, the American Society of Hematology meeting. They plan to analyze the updated data in June.

Patients’ self-entered data is making a difference and advancing knowledge. The more data, the bigger the impact! Read our publication here.

If you are one of the 650 patients whose lived experience is already included in WhiMSICAL, please update your treatment, Hb & IgM, and QoL data HERE. Even just one entry will provide an important activity update, so we urge those who have not visited WhiMSICAL for a while to sign in.

To new participants, please add your voice to the WhiMSICAL registry by joining CART-Wheel.org HERE.

To have your anonymous data included, please enter your data by June 1st.

For Frequently Asked Questions, click HERE. For assistance, email whimsical@iwmf.com.

Together, we can find answers to important questions in WM research as we search for a cure.

- Education -

CancerCare Workshop:

Caring for Your Loved One with Cancer

Monday, May 13,1:30 – 2:30 pm, Eastern Time

Topics Covered

Definition of a Caregiver
What Research Tells Us About Caregivers’ Well-Being
Caregiving for an Older Adult
Caregiving for a Younger Adult
Couples, Partners, Siblings, & Friends
Challenges for Caregivers of Cancer Survivors
Family, Partner, & Friend Communication
Care Coordination Challenges & Tips
Stresses on Family, Partners, Friends, & Loved Ones
Coping with Holidays, Birthdays, & Special Occasions
Managing Family, Friends, Partners, & Traditions
Long-Distance Caregiving
Practical Tips for Managing Caregivers’ Stress
Strategies for Self-Care
The Increasing Role of Telemedicine Appointments
Guidelines to Prepare for Telehealth/Telemedicine Appointments, Including Technology & Prepared List of Questions
Questions for Panel of Experts

Recording from the Leukemia & Lymphoma Society

How your gut health can improve your blood cancer treatment and quality of life

Feeling overwhelmed by all of the practical and financial issues that come with a cancer diagnosis? Our partner Triage Cancer is hosting a FREE conference on May 17 and 18 for individuals diagnosed with cancer, caregivers, and oncology healthcare professionals. We look forward to Triage Cancer CEO, Joanna Fawzy Doran, speaking at our annual Ed Forum on Sunday, May 5th!

- Support -

Cardio Flow - TODAY at 2:00PM EDT

cardio flow friday april 26th at 2PM eastern time

Challenge your coordination and balance while addressing symptoms like fatigue and peripheral neuropathy. Get your body moving with repetitive, simple movements within the safe space of our WM community. Improve blood flow, balance, and mobility! Optional: stick around to connect with the WM wellness community after class. Reach out to Ann if you’d like the Zoom invitation or recording at anngrace@iwmf.com.

Community Yoga at the Ed Forum

Saturday, May 4th at 3:30 PST / 6:30 EDT

Both virtual and in-person!

All levels welcome! Join our ever-expanding wellness community for a 45-minute self-care break with friends from around the world who share your rare diagnosis. Try this gentle, inclusive yoga practice to stay balanced in mind, body, and spirit. Both seated and standing options are available, and caregivers are invited! Optional: Stick around to connect with the WM wellness community after class. To register virtually, click here.

IWMF & NORD Financial Assistance Program

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

The IWMF Travel & Lodging (T&L) Assistance Program has been providing 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 trial sponsor) up to the program's established financial limit.

In addition, at the beginning of 2024, we expanded our program with an annual grant for travel to regularly scheduled WM-related appointments!

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

CLICK HERE for the NORD flyer

For further information or to apply for this program, contact NORD Monday-Friday between 8:30AM - 6:00PM EDT:

203-308-5902 or IWMFTravel@rarediseases.org

Please note that funding is limited.