The Waldenstrom’s Weekly

February 11, 2022

Volume 2, Issue 5

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. The IWMF provides access to The Waldenstrom’s Weekly as a free service to WM community members to share WM related news and events. For more information, please contact [email protected]

SPECIAL ANNOUNCEMENTS

*NEW* Abbreviated COVID-19 Letter to Share with Hospitals for Emergency Medical Events

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is offering an abbreviated statement for hospitals regarding prioritizing Waldenstrom’s macroglobulinemia patients when triaging care during the COVID-19 Pandemic. We recommend that all WM patients have this letter handy and available when visiting an ER in the event that they may have COVID-19.

Stay Safe – Stay Healthy – Stay Waldenstrong!

Lymphoma Coalition Launches the 8th Global Patient Survey on Lymphoma & CLL

world cancer day
Patients and caregivers around the world are invited to share their experiences and insights to improve lymphoma care
 
Lymphoma Coalition has launched its 2022 Global Patient Survey on Lymphoma & CLL. The international survey is conducted every two years and aims to deeply understand the patient and caregiver experience as well as uncover trends, themes and geographic variation. Specifically in 2022, the survey will explore how patients and caregivers participate in care. In the past, the WM community has led the way in responding to the survey. So much so, that they were able to provide WM-specific details for us. Let’s do it again, so that we show other folks the importance of participating in such efforts, and so that we can continue to see results specific to our disease.
 
 The survey is now open. All people aged 18 and over living with lymphoma, including WM, and caregivers are also encouraged to participate. It is available in 19 languages. The patient survey takes approximately 25 – 30 minutes to complete and the caregiver survey can be completed in 15 – 20 minutes. It will close in two months.
 
“This survey is unique in that it gathers data from lymphoma patients around the world, and enables researchers to analyze data specific to various types of lymphoma, including WM, and also enables them to compare results across the various types of lymphoma. Our participation is especially critical to helping researchers better understand the WM patient experience, and in turn, find better ways to treat our disease,” says Peter DeNardis, Chair of the IWMF Board of Trustees.
 
Furthermore, as more people in each country around the world participate, the IWMF also learns more about the patient and caregiver experience in each country and this information can be used to help ensure activities and programs meet patients’ needs.
 
 
Lymphoma Coalition is a worldwide network of lymphoma patient organisations that acts as a central hub for reliable and current information. This is the 8th Global Patient Survey on Lymphoma & CLL, which is done biennially. In 2020, nearly 12,000 participated from around the world. Find out more about the current and past surveys here.

EDUCATION

Recording Available!

DR. Ailawadhi

ASH Highlights
with Dr. Sikander Ailawadhi

About the Presentation:
Join Dr. Sikander Ailawadhi of Mayo Clinic (Jacksonville, FL) on Tuesday, February 8th at 11:30am U.S. ET as he highlights WM research and pertinent information from the 2021 American Society of Hematology (ASH) annual meeting.

The LLS-IWMF Living Well with WM
Free Virtual Program
February 23, 2022 at 6:30PM U.S. ET

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A Virtual Educational Conference for Patients, Caregivers and Healthcare Professionals

Wednesday, February 23, 2022
6:30PM – 8:30PM U.S. Eastern Time

This program is designed to provide attendees with essential information that will help you participate more actively and confidently in decisions about your WM treatment and survivorship.

Waldenström Macroglobulinemia (WM) patients, caregivers, family and friends will gain a better understanding of:

  • WM treatment, including standard care and clinical trials
  • Strategies to make informed decisions about treatment
  • Tips for communicating with your health care team
  • Strategies to manage disease and treatment side effects
  • The impact of COVID-19 and vaccinations 
  • Strategies for managing ongoing cancer survivorship issues, including financial and employment challenges, as well as psychosocial issues
  • Resources available in your local community, at cancer centers, and those provided by LLS

 

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SUPPORT

Story of Hope: Margit Novack

2021 WMUK Patient-Doctor Summit

“How did I get this lucky?

Tell me who gets to live like this?”

New Support Group Alert!
Ibrutinib-Venetoclax Clinical Trial Support Session
February 13, 2022 at 12:00 Noon U.S. ET

Support Group

Are you in a clinical trial for Ibrutinib & Venetoclax, or currently taking this treatment combination? If you would like to join other patients to share your experience, a sharing session is scheduled for Sunday, February 13th at Noon U.S. Eastern Time.

Please contact the IWMF Home Office at [email protected] for meeting link information.

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This is a paid clinical trial advertisement

Thanks to You!

The IWMF is able to offer our education, information and support programs free of charge, thanks to the generosity of WM community members like you.
Please consider a gift of support by clicking below.

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Contact

  • 6144 Clark Center Ave.
    Sarasota, FL 34238
  • Phone: 941-927-4963
  • Fax: 941-927-4467
  • [email protected]