International Waldenstrom’s Macroglobulinemia Foundation

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The Waldenstrom’s Weekly

April 23, 2021

Volume 1, Issue 7

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

During National Volunteer Week, the International Waldenstrom’s Macroglobulinemia Foundation would like to extend our thanks to the countless volunteers who work hard everyday to support everyone affected by WM while advancing the search for a cure.
 
To EVERY person who volunteers their time for the betterment of the WM community – Thank you, from the bottom of our hearts!

RESEARCH

Help WMF Canada Petition for Approval of Use of Zanubrutinib for WM Patients in their Country

WMF Canada needs your help, no matter what country you live in!

Lymphoma Canada is preparing a submission for the pan-Canadian Oncology Drug Review (pCODR) and the Quebec equivalent Institut national d’excellence en santé et services sociaux (INESSS) for an upcoming drug review on Zanubrutinib, also known as Brukinsa, for treatment naïve or relapsed/refractory Waldenstrom Macroglobulinemia.

If you have Waldenstrom Macroglobulinemia and have received Zanubrutinib, you can help by completing our survey.
You can also participate in this survey if you have had treatment with another BTK inhibitor such as Ibrutinib. You CAN STILL participate if you have not received treatment with either of these therapies; we value the opportunity to learn about your lymphoma and its impacts on your quality of life.

The survey provides the patient input required for the submission. This information is used by pCODR and INESSS to help make recommendations to the provinces and territories regarding funding for new cancer drugs.

You do not need to live in Canada to complete this survey.
BY COMPLETING THIS SURVEY, YOU ARE PART OF THE PROCESS THAT MAY HELP PATIENTS GAIN ACCESS TO THIS TREATMENT IN CANADA.

The survey will be open until midnight Pacific Time on Friday, May 7, 2021, and may take 15-20 minutes of your time.

COMPLETE SURVEY HERE!

SUPPORT

Get Moving on Mondays in May!
FREE Chair Yoga Sessions for the WM Community
May 3rd, 10th, 17th and 31st at 2:00PM U.S. ET

SIGN UP FOR SESSIONS
Join a 4-week Chair Yoga series tailored just for those managing WM. No experience needed! We’ll move the breath and body to help battle fatigue, compromised immune system health, and balance issues. While we will remain seated for most of the class, we may stand and use the chair for support for some poses, with modifications so all levels can practice.
 
Our 45 minute classes will incorporate some of the following:
 
  • Breath exercises for reducing stress and boosting the immune system
  • Gentle stretches designed to energize the whole body
  • Yoga poses that move the lymph fluid, and improve balance and steadiness
  • Meditations like body scans to facilitate mindfulness, acceptance, and relaxation
 
 
Instructor:
Ann MacMullan is a certified yoga instructor (E-RYT 200, RYT 500) and believes in the therapeutic value of yoga and meditation for everyone, no matter what age, level of fitness, or life circumstance. She has been sharing the gift of yoga in community, corporate, private, and healthcare settings throughout the Philadelphia area since 2015, and is currently pursuing her IAYT-850hr certification in Yoga Therapy. Her father was diagnosed with WM in 2019, and she is donating her time in honor of him.
 
*Please Note: We will not be meeting on Memorial Day
 
Classes will take place on Zoom and are limited to 100 attendees. If you have not used zoom before, please contact Michelle for a practice session.
 
Questions? Contact Michelle at mpostek@iwmf.com

Bing-Neel Syndrome International Support Group
Sunday, May 16th from 3:00PM –
5:00PM U.S. ET

Reminder: The Bing-Neel International Support Group Meeting will be a chance for patients with the rare syndrome to “meet” one another virtually from across the globe. The meeting will be targeted for WM patients who have Bing-Neel Syndrome or for Bing-Neel care partners.
 
This specialty topic meeting will include a short panel presentation by several Bing-Neel patients followed by small breakout discussion groups.
 
You will need to register in advance for this meeting. After registering, you will receive a confirmation email with meeting link information.

EDUCATION

Recording Available
STEP INTO SPRING with
Stacy Kennedy, MPH, RD, CSO, LDN!

What is the best eating plan for WMers?
Can nutrition and exercise help reduce fatigue?
How much is too much sugar?
Can we go back safely to the gym?
 
Usher in a happy, healing, hopeful Spring while listening to renowned nutrition, wellness and fitness expert Stacy Kennedy!
Stacy recently joined several IWMF Support Groups for a fabulous mega-meeting where she addressed wellness in WM. Enjoy this recording:
 
 
Passcode: Uik^d34S
 

We all know Stacy from her popular appearances at the IWMF’s Ed Forum and the 2020 Virtual Walk for WM! We are thrilled to be partnering with her again!

 
Stacy Kennedy, MPH, RD, CSO, LDN is a Board-Certified Specialist in Nutrition with over 20 years of experience, and holds a B.S. degree in Nutrition & Dietetics from Indiana University, and Master’s degree in Public Health from the University of North Carolina at Chapel Hill.  She is co-founder of Wellness Guides, LLC, and professor of graduate studies at Simmons University. She is an American College of Sports Medicine Certified Fitness Specialist and former Senior Clinical Nutritionist for Dana-Farber Cancer Institute, Harvard Medical School Teaching Hospital in Boston, for 19 years. Stacy is regularly featured in TV, radio, podcasts etc… and is a sought after international speaker.

Recording Available
CancerCare Connect® Education Workshop
Progress in the Treatment of WM

In case you missed it! Listen to some of the top WM physicians at the forefront of treatment and research: Dr. Stephen Ansell, Dr. Steven Treon, Dr. Jorge Castillo and Dr. Andrew Branagan, with a guest appearance by our IWMF Board Chair, Pete DeNardis!
 
Topics Covered
  • Overview of Waldenstrom’s Macroglobulinemia, including Staging, in the Context of COVID-19
  • Symptoms & Signs
  • Front Line Treatment for WM
  • Treatment for Relapsed/Refractory WM
  • New Treatment Approaches
  • Translating Genomic Findings into New Treatment Opportunities for WM
  • Clinical Trials, in the Context of COVID-19
  • Controlling Symptoms & Treatment Side Effects, including Reducing Complications
  • Peripheral Neuropathy
  • Follow-Up Care
  • Communicating with Your Health Care Team about Your Quality-of-Life Concerns
  • Guidelines to Prepare for Telehealth/Telemedicine Appointments
  • Questions for Our Panel of Experts
LISTEN TO THE REPLAY

Over 450 Registered!
IWMF Global Educational Webinar
May 4, 2021 at 1:30PM U.S. ET

Living with Peripheral Neuropathy:
No Easy Feat

 

Join this exciting online event with a lively
Ask the Doctor Session!

About the Program
This 90-minute webinar will explore different coping strategies and treatment options for those living with the pain and challenges of peripheral neuropathy. The doctors will also address the differences between WM-caused PN versus treatment-caused PN. An engaging Q&A will follow the presentation so please submit your questions in advance when registering. All questions addressed at the event will be pre-submitted.
 
Are you interested in a PN Support Group? Please let us know when you register!
REGISTER HERE!
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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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