The Waldenstrom's Weekly

May 31, 2024

Volume 4, Issue 21

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 Announcements -

Volunteer Spotlight: Eileen Sullivan

This week IWMF spotlights another new addition to the IWMF Board of Trustees, Eileen Sullivan. Welcome, Eileen!

Eileen Sullivan is a retired educator with a master's degree in environmental education from the University of Michigan. Before retiring, Eileen had a wide variety of experiences, including teaching in a Catholic school outside of Detroit immediately after college, numerous summer camp administrative roles, teaching in an outdoor school in Maine, running outdoor education programs for the YMCA and the Girl Scouts in Greater Boston, and then supporting science education in a school district near Boston for several decades. She currently volunteers at the Harvard Museum Mineral Gallery as a guide. 

Eileen had been diagnosed with WM in 1995 when she found the fledgling WM online support community shortly after. In addition to recently joining the IWMF Board, in recent years, she has taken on the role of WM Support Group leader for Massachusetts, has become an active supporter of specialty WM Zoom support groups, and is an active member of the Ed Forum planning committee. Eileen received the Judith May Volunteer Award in St. Louis in 2023. As a new member of the Board, Eileen is looking forward to offering her perspective as a patient, educator, and volunteer in support of IWMF's mission.

Relaunched IWMF Shop!

- Research -

WM-NET Update

Loncastuximab Tesirine in WM

From time to time, WW will spotlight clinical trials in the WM Clinical Trials Network (WM-Net). WM-Net is a multi-institutional network for clinical and research programs dedicated to WM. In this issue, we are spotlighting a study examining the safety and effectiveness of loncastuximab tesirine as a possible treatment for participants with Waldenström Macroglobulinemia (WM). Shayna Sarosiek, MD, Dana-Farber Cancer Institute, is the principal investigator. For more information about eligibility and enrolling in this trial, please click the button below to learn more.

This is a single-arm, open-label, phase II study to evaluate the safety and efficacy of loncastuximab tesirine in patients with Waldenström Macroglobulinemia (WM) who have received at least 2 prior treatments, including an anti-CD20 antibody such as rituximab and a BTK inhibitor such as ibrutinib.

The U.S. Food and Drug Administration (FDA) has not approved loncastuximab tesirine for Waldenström Macroglobulinemia (WM) but it has been approved for other uses. Loncastuximab tesirine is a type of therapy called an antibody-drug conjugate. This type of treatment is an antibody to CD19, a protein that is typically found on B-cells and plasma cells in patients with Waldenström Macroglobulinemia (WM). This is a targeted therapy that uses an antibody (immunoglobulin) to deliver a toxin directly to the cancer.

The research study procedures include screening for eligibility and study treatment including evaluations and follow-up visits.

It is expected that about 36 people will take part in this research study.

ADC Therapeutics is supporting this research study by providing funding and the study drug.

If you are interested in learning more about clinical trials and how you might participate, please visit https://iwmf.com/clinical-trials/

Submit Your Data TODAY for WM Research!

Registry investigators for the WM Study In CARTWHEEL: WhiMSICAL are seeking help from all WM patients globally to contribute their data for an abstract for the major hematology conference, the American Society of Hematology  meeting. The investigators 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 TOMORROW, 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.

Cardio Flow TODAY at 2:00PM ET 

Challenge your coordination and balance while addressing symptoms such as 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 would like the Zoom invite or recording at anngrace@iwmf.com.

Young WM Support Group Meeting

TOMORROW, June 1st at Noon ET

The Young WM Support Group will be having a meeting tomorrow 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,that will last approximately one hour.

Saturday, June 1, 2024

12:00PM - 1:00PM ET

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

T'ai Chi & Qi Gong with Rami Rones

Tuesday, June 4th at 2:00PM ET

Join Rami Rones to safely explore the ancient mind-body therapies of T’ai Chi and Qi Gong. 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 would like the Zoom invitation or recording: anngrace@iwmf.com.

Sound Meditation for WM is BACK!

Friday, June 7th at 2:00PM ET

“This helps me escape from my tinnitus and body pain.” -WM Patient

Relax to the sound of authentic Himalayan singing bowls, with gentle verbal guidance and healing chants to further calm the nervous system. Caregivers are more than welcome! Reach out to anngrace@iwmf.com to receive our Zoom invitation and follow-up recordings.

In Case You Missed It

Do you give yourself permission to rest? Rest is a powerful and much-needed medicine for many of us. Yoga Nidra has been shown to decrease stress levels, improve sleep quality, elevate well-being, and increase the mindfulness of the participants. If you’d like to get on the mailing list for future classes, email Ann Grace at anngrace@iwmf.com.

The IWMF calendar of events is updated regularly with upcoming IWMF Support & Specialty Topic Groups, International Affiliate Meetings, and IWMF Partner Meetings. Check out what's on the horizon HERE!

IWMF & NORD Financial Assistance Program

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.

This year, to reach more WM community members and further our mission of achieving better patient outcomes, we are now expanding 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. If you would like to contribute to the IWMF and our T&L Fund, please contact Annette Preston, IWMF Director of Donor Engagement, at apreston@iwmf.com.

This is a special opportunity to help other WM patients!

HealthWell Foundation Reopens WM Fund

The HealthWell Foundation® has reopened their fund to provide financial assistance to patients living with WM.

Through the fund, HealthWell will provide up to $8,000 in copayment or insurance premium assistance to eligible patients with annual household incomes up to 500 percent of the federal poverty level to obtain prescription medications for the treatment and management of their condition. Please note that funding is limited and grants are awarded on a first-come, first-served basis for eligible patients. This fund typically opens and closes quickly.

To determine eligibility and apply for financial assistance, visit HealthWell’s Waldenstrom Macroglobulinemia Fund page.

WM Community Corner

Pedro Simko and his wife, Dana moved to Chiang Mai, Thailand from Switzerland. They are editing a travel blog that summarizes their experiences and tips for global travel.

Partner Spotlight: CURE®

Let’s make difficult conversations easier and share the lessons you have learned. CURE® is accepting written submissions for the Share Your Story section of curetoday.com. Writers who have their work published will also be eligible to get some free CURE® swag! Learn more HERE.

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