The Waldenstrom's Weekly

August 11, 2023

Volume 3, Issue 29

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.

-Walk for Waldenstrom's -

-European Patient Forum -

Join the IWMF and WMUK for the First Ever European Patient Forum on Saturday, October 21st

Hear from experts, meet patients and families and talk to healthcare professionals at the FIRST EVER European Patient Forum co-hosted by IWMF and WMUK!

We’ll be live in Birmingham (United Kingdom) and Amsterdam (The Netherlands) covering everything you want to know about living with WM.

Our joint sessions will be streamed between our two locations, and will conclude with an ‘Ask the Healthcare Professional’ panel where you may ask your questions LIVE to a panel of nurses, doctors and allied healthcare professionals from across Europe.

The event is an exciting first-of-its-kind for both our organisations, combining our resources to provide even MORE expert advice and personal support for people affected by WM across Europe.

Click HERE for more information, agenda & registration.

We hope you can join us!

-Story of Hope Update -

Julianne & John Flora-Tostado:

Our 49th Anniversary

"Making the best while facing the unknown together."

- Education -

Webinar Replay Available from BeiGene:

Cancer & Mental Health

Featuring WM Expert, Dr. Steven Treon & Licensed Clinical Social Worker, Jennifer Bires, talking about the emotional impact of cancer is never easy - especially when you may be struggling with anxiety and depression. Check out the webinar replay highlighting the importance of discussing mental health with your care team, including tips for patients, caregivers, and professionals about how to better communicate about emotional wellness during cancer.

IWMF Patient Perspective Video Series:

Recruiting Volunteers for 2nd Installment

Our first installment of the IWMF Patient Perspective Video Series was a hit, with hundreds of views on our YouTube channel! We are now recruiting WM community member caregivers as well as patients who have received treatment to share their experiences with us. All you need is a computer with a webcam, and Sharon Piotrowski will guide you through the rest! Please contact Sharon at wmpatientperspectivesvideo@gmail.com if you wish to participate, and if you haven’t watched the first series playlist yet, you can check it out HERE.

IWMF & NORD Financial Assistance Program

The IWMF is proud of our first 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 has recently been expanded to 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.

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 M-F 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!

Leukemia & Lymphoma Society:

Mental Health Fact Sheet

From The Leukemia & Lymphoma Society (LLS):

The term “mental health” includes your emotional and psychological well-being. Your mental health guides how you handle stress, manage relationships and make decisions. Caring for your mental health is as important as caring for your physical health. Check it out HERE!

Cardio Flow for WM: TODAY at 2:00PM U.S. ET!

45 minutes of Mindful Movement

Physical activity is the number one intervention for cancer-related fatigue. This medium-paced class will feature cardio, strength, and balance training to safely get the heart rate up for those managing WM. Come as you are and have a little fun while you’re at it! Contact Ann MacMullan for the Zoom link at ann@anngraceyoga.com.

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