The Waldenstrom’s Weekly

May 27, 2022

Volume 2, Issue 19

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

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!

RESEARCH

WhiMSICAL Delivers the Goods!
Key Findings Summarized by Dr. Ibrahim Tohidi

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 hereor for assistance, contact whimsical@iwmf.com.

SUPPORT

NEXT WEEK!
New Pilot Program on June 3rd and June 17th!
Cardio Flow for WM from 2:00-2:30PM U.S EDT

Could-a-Clinical-Trial-Be-Your-Best-Cancer-Treatment-Option-1

Cardio Flow – 30 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!
 
  • Get your flow on with simple repetitive movements that strengthen the core and legs, work the upper body, and pump the lymph fluid for immune system support.
  • We will be both seated and standing for the class, using the chair for balance as needed. Take “breath breaks” throughout as needed and stick around for our optional community chat afterwards.
  • Please have a chair, yoga mat if possible, and a Thera-band for resistance exercises. Wear comfortable clothes and supportive shoes if needed. Talk with your doctor about any exercise restrictions you might have at this time.
  • If you can’t make the live class, a recording will be provided afterwards.
Ann MacMullan, E-RYT 500, is the WM Community Yoga Instructor. She enjoys uplifting the WM community through breath-connected movement, mindfulness, and by creating a supportive group environment on Zoom. Her father was diagnosed with WM in 2019.
To join the mailing list for this program, contact Michelle Postek at mpostek@iwmf.com or contact the IWMF office at 941-927-4963.

SHOW US YOUR SWAG!

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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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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