The Waldenstrom's Weekly

May 24, 2024

Volume 4, Issue 20

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: Craig Prizant

IWMF is grateful for our volunteers who dedicate countless hours and contribute their unique talents to support our community. From time to time, we will spotlight volunteers and give you the opportunity to get to know them.

This issue's spotlight shines on one of our newest Board members, Craig Prizant. Craig, who also serves on the IWMF Fundraising Committee, is the Chief Development, Marketing & Leadership Officer at Vista Del Mar Child and Family Services, a premier mental health children and family services agency and has been there for over ten years. Craig has spent the past 17 years in the not-for-profit world guiding some of the largest charities in terms of raising money, branding and identifying key volunteer leadership. Prior to his not-for-profit work, Craig was one of the foremost authorities on branding global corporations at Saatchi & Saatchi Advertising, collaborating with clients such as Nike, Pepsi, Apple Computer, and Warner Brothers. He grew up in Los Angeles, though he has worked around the globe, and is proud to call Los Angeles home.  

Welcome Craig!

Check Out Our New Wellness Web Pages!

All IWMF wellness classes and webinar information can now be found on the IWMF website. Wherever you are in your wellness journey, we have something for you. Our evidence-based practices address the whole person—not just the disease. With this holistic approach, we strive to help you thrive! 

- Story of Hope -

From Australia- David Rabie: My Story of Hope

"I stared death in the face, and I saw the blinding white light."

- Research -

One Week Left to Help WhiMSICAL Investigators!

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 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.

Clinical Trial Spotlight

Testing the Combination of Venetoclax and Rituximab, in Comparison to the Usual Treatment (Ibrutinib and Rituximab) for Waldenstrom's Macroglobulinemia/​Lymphoplasmacytic Lymphoma.

- Education -

Next Thursday! Eating Well to Live Well with WM

IWMF is committed to providing resources to support your health and manage common symptoms of WM, such as fatigue. On May 30th, Chef and Integrative Oncology Nurse Navigator Laura Pole will go beyond basic nutrition by exploring the principles of health-supportive food selection that emphasize nourishment on a holistic level. 

In this webinar, we'll tackle some of the practical aspects of translating a dietary prescription to a plate of delicious healthy food, and Chef Laura will also share a quick and easy recipe! Create a shift in your perspective from “watchful waiting” to “active surveillance;” where self-care practices such as eating well can contribute meaningfully to living well with a chronic illness.

Laura Pole is the Director of Nourishment Education Programs at Smith Center for Healing and the Arts, as well as the head chef for their cancer retreats. Her popular cooking classes are centered on helping participants translate a diet prescription to a plate of nourishing delicious food. She has created and coordinated trainings for professionals and patients in culinary translation, cooking for people with serious illness and integrative oncology navigation. She is also the Senior Clinical Consultant for the CancerChoices integrative cancer care website. As an oncology clinical nurse specialist, integrative oncology nurse navigator, and culinary translator, Laura has been caring for people with serious illness for over 40 years.

Lymphoma Research Foundation Workshop

June 15th in Washington, DC

Join the Lymphoma Research Foundation (LRF) at their Mid-Atlantic Lymphoma Workshop on Saturday, June 15, in Washington, DC. This free patient education program offers opportunities to learn the latest in lymphoma, including a WM breakout session and Q&A and have your questions answered by experts. To learn more and to register, visit LRF's event page.

The 2nd World Patients Conference (available virtually and in-person in South Africa) will provide patients, caregivers, Non-Governmental Organizations (NGOs), and leading patient advocates the platform and opportunity to network and raise patients' voices at a global level. Moreover, other healthcare stakeholders, including healthcare providers, international health organizations, and industry partners from all around the world will also attend this global event. The program outline of the conference is available here.  

This Memorial Day we are celebrating all of our dear WM friends who have served in the military. Thank you for your service and sacrifice. Check out our Yoga page on the IWMF website. You'll find recent recordings to practice with a recording at your convenience! playlist to practice with a recording at your convenience! Click here for self-care. 

Cardio Flow on Friday, May 31st, 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

Next Saturday, June 1st at Noon ET

The Young WM Support Group will be having a meeting in June 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.

Saturday, June 1, 2024

12:00PM - 1:00PM ET

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

WM People of Color Support Group

Friday, June 7th at 1:00PM U.S. ET

The WM People of Color Group will have their next meeting for patients and caregivers in June. Attendees will join leaders Paula and Mike on Zoom for a sharing session, which will last approximately one hour.

Friday, June 7th, 2024

1:00PM - 2:00PM U.S. ET

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

In Case You Missed It

T’ai Chi and Qi Gong with Rami Rones

From participant, Karen P: "The areas he targeted were highly relevant to many of the symptoms we typically experience. Rami sure knows what he is doing and is a wonderfully gentle and empathic teacher.”

WM Community Corner

Sharon Piotrowski, IWMF volunteer, recently completed four treatment cycles of Bendamustine & Rituxan. Throughout the weekend, she is biking a 40-mile trip from Amsterdam to Brussels. Way to go, Sharon!

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