International Waldenstrom’s Macroglobulinemia Foundation

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The Waldenstrom’s Weekly

June 3, 2022

Volume 2, Issue 20

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 info@IWMF.com

2024 Waldenstrom's Weekly Archive

2023 Waldenstrom's Weekly Archive

 

2022 Waldenstrom's Weekly Archive

2021 Waldenstrom's Weekly Archive

On National Cancer Survivors Day®, which is held on the first Sunday in June, thousands gather across the globe to honor cancer survivors and to show the world that life after a cancer diagnosis can be fruitful, rewarding, and even inspiring.
 
The day offers an opportunity for all people living with a history of cancer – including our global WM community – to connect with each other, celebrate milestones, and recognize those who have supported them along the way. It is also a day to draw attention to the ongoing challenges of cancer survivorship in order to promote more resources, research, and survivor-friendly legislation to improve cancer survivors’ quality of life.
 
Whether you’re a patient or caregiver, take a few moments on Sunday to reflect on your journey thus far, and to celebrate the hope and promise of therapeutic advancements and of being able to share your experiences with fellow WMers via the IWMF. 
 
If you haven’t already, take advantage of the many support services that the IWMF provides – Support Group and International Affiliate meetings, Facebook and email discussion groups, quarterly newsletter (IWMF Torch), special interest group meetings, the annual Educational Forum, and one-on-one LIFELINE phone/email interactions. No matter what part of the world you live in, you are never alone. We’re all in this together, and together, we can live better with WM, and work towards finding better treatments, and ultimately a cure for WM. 
 
For more details about all the services available to you via the IWMF, click HERE.
 
And, while you’re at it on Sunday, reach out to a fellow WMer just to say hello!

EDUCATION

Registration Open!
IWMF Ed Forum Primer Series – Part II

Genomics/Science of WM: Rebroadcast with NEW LIVE Q&A!

Wednesday, June 15th, 2022
1:30PM – 2:30PM U.S. Eastern Daylight Time

Speaker

Dr. Sikander Ailawadhi
Professor, Division of Hematology-Oncology

Mayo Clinic, Jacksonville, Florida

Moderator

Eileen Sullivan
IWMF Support Group Leader for Eastern Massachusetts
IWMF LIFELINE Volunteer

About the Program:

The second in our Ed Forum Primer Series, this rebroadcast provides a basic understanding of the science of WM and sets out a framework of basic genetic concepts behind the mutations that are important in WM. Learn the ways in which these mutations impact the signaling systems that control the behavior of WM cells, and to recognize how these mutations are changing the landscape of therapies for WM.
 
After the broadcast, Dr. Ailawadhi will answer questions from the chat box LIVE!
REGISTER HERE

Replay Available!
CancerCare Connect® Education Workshop

Could-a-Clinical-Trial-Be-Your-Best-Cancer-Treatment-Option-1
The replay is available from the CancerCare program from May 25th, titled Waldenstrom’s Macroglobulinemia (WM): Treatment Progress. Many topics were covered and included top WM physician speakers, Dr. Andrew Branagan (Massachusetts General Hospital), Dr. Prashant Kapoor (Mayo Clinic), and Dr. Shayna Sarosiek (Dana-Farber Cancer Institute).
REPLAY AVAILABLE HERE

RESEARCH

Leukemia & Lymphoma Society Webinar
Caregiving Over Coffee:
An Interactive Q&A with Dr. Applebaum

Thursday, June 16th
1:00PM – 2:00PM U.S. ET

Could-a-Clinical-Trial-Be-Your-Best-Cancer-Treatment-Option-1
Thank you to all who participated in the WhiMSICAL COVID 400 campaign back in March. Dr. Ibrahim Tohidi has analyzed the results of your participation, and has summarized the following:
  • 386 WM patients responded to the WhiMSICAL COVID questions, helping to build knowledge of risks for WM patients
  • 9% of 205 patients tested for COVID returned a positive result.
  • Of the 64 patients with antibody testing results, almost 4 out of 5 WM patients mounted a positive antibody response after 2-4 vaccines, with no clear difference between WM treatments.
  • The vast majority of vaccinated WM patients did not report COVID infection, although infections post-vaccination did occur. Almost none were hospitalized.
We are grateful for your support and for helping researchers to understand the impact of Covid on the WM community! A full report is planned for publication, and we will be sure to share it with you once it becomes available.
If you wish to join the IWMF WhiMSICAL Registry, register at CART-wheel here and welcome aboard! For more information, click here, or for assistance, contact whimsical@iwmf.com.

Allison J. Applebaum, PhD
Associate Attending Psychologist
Director, Caregivers Clinic
Department of Psychiatry and Behavioral Services
Memorial Sloan Kettering Counseling Center
New York, NY

Caregiving can be stressful and leave you with many questions about how to best care for your loved one and yourself.
 
The LLS invites you to grab a cup of coffee, tea, or your favorite beverage, and join them and Allison J. Applebaum, PhD for a short presentation and interactive Q&A session. Participants can submit questions prior to or during the program.
REGISTER HERE

WM Community Corner

Could-a-Clinical-Trial-Be-Your-Best-Cancer-Treatment-Option-1
IWMF Finance Manager, Robin Tucker, wore her IWMF swag at the Monarch Pass, located on the Continental Divide in Colorado (US).
 
Where has YOUR IWMF Swag taken you around the world? Be sure to send a photo to office@iwmf.com to be featured in an upcoming newsletter! You can check out the IWMF shop HERE.

Have you purchased any IWMF gear? Send a picture of you with your swag to mpostek@iwmf.com and get featured in the WM Weekly!

IWMF SHOP BANNER
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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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