The Waldenstrom's Weekly

August 23, 2024

Volume 4, Issue 32

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 -

European WM Patient Forum - Secure YOUR Seat!

We are excited to announce that we have 118 registrants for the European WM Patient Forum! We are less than ONE month away, so don’t miss the opportunity to join us on site in London, UK, or virtually with a front-row seat at home! With rockstar physicians and speakers on the agenda, this event has something for everyone, and includes the popular Ask the Healthcare Professional Panel. Register today!

2024 Walk for Waldenstrom's

In less than two weeks, the Walk for Waldenstrom's: Accelerate the Cure annual fundraising and awareness event will commence!

The purpose of this event is to come together and accelerate the search for a cure. If you would like to get involved and show your support for the Waldenstrom's community, you can participate in a variety of ways. You can walk or do other activities that you enjoy, in person or virtually. Whether you're a patient, caregiver, friend, or family member, we invite you to participate.

We’ve partnered with Esri, a global leader in geographic information system (GIS) software, to help us track our collective journey around the world. Starting September 1st, every step you take will be added to our global movement.

Rally your networks, raise awareness and funds, join local walks, and earn prizes for your efforts! Let's walk together for a cure!

WM Weekly DID YOU KNOW?

Did you know IWMF offers two Internet-based group discussion forums where you can communicate with others, share experiences and insights, exchange information, and get emotional support? The discussions typically focus on WM diagnosis, treatments, research, prognosis, side effects, and related conditions. Thousands of patients and supporters from all over the world are signed up, so come join us by clicking the links below!

• IWMF CONNECT
• IWMF Facebook Group

A BIG thanks to Julianne Flora-Tostado (IWMF Support Group Leader) and Meg Mangin (IWMF Board Trustee) for their roles as moderators of these important resource groups, as well as other volunteers who provide support to community members!

For help navigating IWMF CONNECT or Facebook, contact office@iwmf.com.

- Education-

Webinar from Union for International Cancer Control:

Addressing Antimicrobial Resistance for Better Cancer Care

Tuesday, September 3, 2024, at 8:00AM ET

Antimicrobial medicines such as antibiotics and antifungals are an indispensable part of cancer treatment. People with cancer are more susceptible to infections due to weakened immune defenses, with as many as one in five cancer patients undergoing treatment being hospitalized due to an infection. This dialogue will discuss the importance of collaboration in addressing antimicrobial resistance (AMR), particularly highlighting the role of patient organizations, civil society as a whole, and multisectoral collaboration in addressing AMR for better cancer care. Learn more and register.

Lymphoma Research Foundation Webinar:

Understanding Diagnostic and Biomarker Testing

Wednesday, September 4, 2024 

Presenter: Marco Ruella, MD, University of Pennsylvania

Program Overview

• How are lymphomas and CLL diagnosed
• What is biomarker testing?
• How is biomarker useful in lymphoma and CLL treatment?
• How can patients access biomarker testing?
• Latest advances in testing
• Questions and Answers

You can register on LRF's website here.

Nutrition Resource from the Academy of Oncology Nurse & Patient Navigators (AONN)

Eating Well While Living with Cancer Patient Guide

From AONN:

Designed to be practical and comprehensive, this booklet provides diet and meal preparation guidelines for cancer treatment. It covers the essentials of a well-balanced diet, identifying and preparing nutritious foods, and managing a healthy eating plan while dealing with treatment-related side effects. 

Yoga Nidra on Friday, August 23rd at 2:00PM ET

"Such a welcome class. It helped me connect with a more positive spirit which I’ve been struggling with throughout the clinical trial so far.” 

Whether you’re watching and waiting, undergoing treatment, or recovering, rest is a powerful and much-needed medicine. Access your innate state of relaxation during Yoga Nidra, a guided meditation to release effort and explore the internal mind-scape. Reach out to anngrace@iwmf.com for more information.

Get the IWMF Wellness Bulletin!

Are you interested in receiving a monthly newsletter featuring all the wellness news for the month ahead? Get the Zoom links to every class in one spot, meet featured members of the wellness community, and learn the latest on how integrative therapies can help you navigate your journey. Note: if you are already on a wellness class list, you will automatically receive the bulletin. Reach out to anngrace@iwmf.com to sign up - one email per month only! 

30-Minute Mindfulness Meditation:

Tuesday, August 27th at 12:00PM ET  

“I have tried meditation with no luck. Today, focusing on the breath, I was realizing that the breath is always there, it is stable, it is reliable,” reported WM friend Judith K., after our July meditation. Studies show that use of mindfulness among people with cancer significantly reduced psychological distress, fatigue, sleep disturbance, pain, and symptoms of anxiety and depression. Reach out to anngrace@iwmf.com to register.

From Patient Resource:

Explore the Benefits of Therapeutic Writing

From Patient Resource:

Receiving a cancer diagnosis brings up a wide range of feelings that may be difficult to work through. One way to express these emotions is through writing therapy, also called expressive writing. According to several studies, writing therapy can even help boost your emotional well-being, reduce your cancer-related symptoms, and improve your physical abilities. 

Read more here, and check out the IWMF Wellness Educate & Empower Webinar with Kimberley Snow, Ph.D.: Cultivating Inner Wellbeing through Writing, Movement, and Meditation.

August Wellness Calendar

WM Community Corner: Walk for WM Spotlight

The IWMF Home Office staff and support group leaders in Sarasota, Florida will be hosting a Walk for Waldenstrom's on Saturday, September 7th, at 8:30AM ET. We'll walk across the Ringling Bridge, crossing over the Sarasota bay. For more information or to RSVP, please email or call Shelly at mpostek@iwmf.com or 941-927-4963. We encourage local community members to join us in raising awareness about WM!

Want to buy a 2024 Walk for Waldenstrom's T-Shirt? Get yours at the IWMF Shop!

Note: For individual Walk for WM fundraisers who raise $150 or more, you will get a t-shirt for free!

Accelerate the Cure is much more than a campaign slogan. It’s our next 31 million USD effort, over five years, to find a cure and support those with WM and their caregivers. Global researchers have a new set of WM research targets, and they are afire with excitement. We believe we can find that cure, and we hope 100% of our WM family will contribute! IWMF has three Research Opportunity Funds for your consideration: One for global research, one for WM-NET to accelerate clinical trials, and one that funds the next generation of researchers. We have a fourth fund that enhances our ability to be the world hub for WM education and support. In the months ahead, through this weekly and the Torch, we will illustrate the research progress that is rapidly accelerating through donor investment.

We encourage you to visit our Accelerate the Cure page on IWMF’s website to learn more and perhaps contribute. We invite conversations. Contact us at: office@iwmf.com.

Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on "download photos" at the top to view all content. For more information, email info@IWMF.com or visit www.IWMF.com