The Waldenstrom's Weekly
July 15, 2022
Volume 2, Issue 26
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IWMF is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. 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 [email protected] or visit www.IWMF.com
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Presenting Two New IWMF Publications! |
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A new IWMF booklet, “Basic Guide to Understanding Your Bone Marrow and Waldenstrom Macroglobulinemia” and newly created Fact Sheet, “The Bone Marrow and Waldenstrom Macroglobulinemia (Beyond Basics)” are now available – with basic and more in-depth understanding of how the bone marrow changes with WM and the medical tests associated with the bone marrow biopsy.
The IWMF is pleased to provide this latest information to our members at https://iwmf.com/publications/. The new booklet and Fact Sheet are also being translated into traditional Chinese, simplified Chinese, Spanish, French, German, Italian, Norwegian, Polish, Portuguese, and Finnish Suomi. These publications were supported in part by a grant from Pharmacyclics, an AbbVie Company and Janssen Biotech, Inc.
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Wanda Huskins Story of Hope Update:
Following Difficult And Uncertain Roads Can Still Lead to Beautiful Clear Scenery -
Journeying on With WM
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"My goal was never to turn back the clock on WM, but to celebrate living between each stroke of the clock." |
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TEN DAYS REMAINING to Contribute to IWWM-11 with YOUR Patient Data! |
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Please help WhiMSICAL investigators present on YOUR WM Patient-Entered Data to WM Experts at the biggest gathering of international WM clinicians and researchers, the IWWM-11 conference!
From Pete DeNardis, IWMF Board Chair:
"Your input...your voice...is needed! The more of us that participate, the stronger the value of the data and analysis that is presented to the international research community that will be gathering in Spain later this year to discuss what is known about WM. This is yet another way by which, together - we can work towards a world without WM!"
Please add your voice to the WhiMSICAL registry by joining and completing, or updating, the questionnaire, especially your treatment (question 9) and quality of life (questions 20 and 21) data. To be able to have your anonymous data included at the IWWM-11 conference, please enter your data by Monday July 25th, 2022.
If you are not yet enrolled, logon to the IWMF WhiMSICAL Registry by registering at CART-Wheel.org HERE and welcome aboard!
If you have enrolled already in the IWMF WhiMSICAL Registry, logon to CART-Wheel HERE. Even just one entry will provide an important update, so we especially urge those of you who have not visited WhiMSICAL for a while to sign in.
For Frequently Asked Questions, click HERE.
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Understanding Your Blood and
Bone Marrow Test Results:
Rebroadcast with NEW LIVE Q&A!
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Speaker:
Rafat Abonour, MD
Professor of Medicine, Pathology, and Laboratory Medicine
Indiana University
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Moderator:
Bonnie Beckett, Ph.D.
IWMF Public Policy Liaison
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About the Program:
The third in our Ed Forum Primer Series, this rebroadcast describes the blood and bone marrow tests used to help diagnose WM, as well as explain and interpret the typical tests used by healthcare providers to monitor the disease status of their WM patients.
*Please note that you will need to register at the link below to watch the recording on demand.
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NORD Community Conversation:
Drug Development for Rare Diseases
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Wednesday, July 27, 2022
1:00PM - 2:00PM U.S. ET
You are invited to a community conversation on the drug development process, special challenges with rare diseases, and how patients and patient organizations can get involved.
Panelists will discuss the basic steps in drug development, the changing role of patient organizations, and current efforts to accelerate the development of safe, effective treatments for people with rare diseases.
This webinar is being hosted by the National Organization for Rare Disorders (NORD) and is intended for all members of the rare disease community, including patients, caregivers, advocates, researchers, and health care providers.
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Recording Available
Yoga Nidra with Ann MacMullan
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Join Ann MacMullan, our WM Community Yoga instructor, for a guided Yoga Nidra meditation. No movement required! Sit or lie down comfortably and enjoy 30 minutes of conscious relaxation.
Yoga Nidra can reduce stress levels, help you sleep better, and elevate your well-being. Give yourself permission to relax and rest, while setting intentions for personal growth and exploring the deeper self.
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Don't forget to send pictures of you in your IWMF Swag to Michelle Postek to be featured in an upcoming newsletter! [email protected]
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This is a paid clinical trial advertisement.
The information about this clinical trial is intended to be helpful and educational, but it does not constitute an endorsement by the IWMF and is not meant to be a substitute for professional medical advice. The IWMF strongly encourages discussions with their health care professionals about specific medical conditions, side effects, and treatments.
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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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