International Waldenstrom’s Macroglobulinemia Foundation

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  • 6144 Clark Center Ave.Sarasota, FL 34238
  • Phone: 941-927-4963
  • Fax: 941-927-4467
  • office@iwmf.com

The Waldenstrom’s Weekly

January 7, 2022

Volume 2, Issue 1

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

SPECIAL ANNOUNCEMENT

The January 2022 IWMF Torch (Issue 23.1)
is Now Online!

rare patient voice
Hello everyone!
 
Can you believe it’s 2022?
 
As we begin our third year of the pandemic, I’m sure we all feel as if it will never end. As omicron stalks us, we continue also to deal with our WM. While the IWMF can’t remedy the omicron situation, it can support us and educate us about WM, and four times a year, the Torch makes every effort to do just that.
 
On the medical front, the cover article for the first issue of the new year is by Dr. Shayna Sarosiek, of the Dana-Farber Cancer Institute. She discusses amyloidosis, its diagnosis, symptoms, and treatments. While it’s a relatively rare complication of a rare disease, it is prudent for us to be aware of it. You’ll also find the COVID-19 treatment news in Medical News Roundup up-to-date and very useful, as well as a look at new IWMF-supported research that will benefit all of us.
 
As we continue to implement some changes in the Torch, thanks to the survey of our readers, I hope you are enjoying the new focus on personal stories from support group members. You’ll find very interesting, as I did, the story from Alberta, Canada, of two friends living in the same neighborhood, who each found that they have WM. What’s the chance of that? As a team, they started the first support group in Calgary, a big plus for those WMers living throughout Alberta, who are now able to attend using Zoom.
 
Having a balance between technical and personal support articles is important to the Torch editors. We aren’t always able to strike a perfect balance, but we do know that WMers not only need to understand our disease and its treatments, but also need a good dose of hope and the support of others who are there with us. It’s an empowering combination.
 
I hope you enjoy this issue, and as usual, I’m open to comments and suggestions about what you’d like to read in the Torch.
 
Best wishes for a healthy and happy new year!
 
Shirley Ganse
Editor, IWMF Torch
READ THE JANUARY TORCH HERE

SUPPORT

Peripheral Neuropathy Support Session

January 26th, 2022 from 1:00PM – 3:00PM U.S. ET

The IWMF Peripheral Neuropathy Planning Committee is excited to announce their next meeting in 2022! We will have a special guest speaker, Nancy Campbell, M.S, Clinical Exercise Physiologist!

2021 WMUK Patient-Doctor Summit
Nancy Campbell is a Clinical Exercise Physiologist in the Zakim Center for Integrative Therapies and Healthy Living at Dana-Farber Cancer Institute. Nancy provides personalized exercise consultations for patients through the Zakim Center. She also teaches several strength training based exercise classes for patients and survivors via Zoom. Nancy has been at Dana-Farber since 2005, is a certified ACE Personal Trainer and has the American College of Sports Medicine Cancer Exercise Trainer certification.  
 
If you are suffering from Peripheral Neuropathy, be sure to join us! This program will include a lively Q&A session following Nancy’s presentation.
 
Registration is required to attend this session. you will receive a confirmation email with Zoom meeting link details once you register. For any questions about this program, contact Michelle Postek at mpostek@iwmf.com or at 941-927-4963.
REGISTER HERE

From Patient Resource:
Writing Therapy Offers Many Positive Benefits

2021 WMUK Patient-Doctor Summit
Receiving a cancer diagnosis can bring up a variety of emotions that may be difficult to express. Writing therapy, also called expressive or therapeutic writing, can help you understand your diagnosis, work through these feelings and reflect on what the disease means to you, your family and your friends. Some studies have shown that writing therapy can even help boost your emotional well-being, reduce your cancer-related symptoms and improve your physical abilities. 
 
Learn more about therapeutic writing HERE, and you can check out the Patient Resource website HERE.

WM Community Yoga Classes Continue in 2022!
Mondays at 2:00PM U.S. Eastern Time

2021 WMUK Patient-Doctor Summit
We had so much positive feedback from our WM Chair Yoga series that we are going to continue offering this program in 2022!
 
Join us for Chair Yoga 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 (E-RYT 500) is a certified and insured yoga instructor, Breath Coach, and Yoga Therapist Candidate. She strongly 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. Her father was diagnosed with WM in 2019.
 
 
If you would like to join the mailing list for this free series, email Michelle at mpostek@iwmf.com .

New Free Offering for WM Patients-
Monthly Yoga Nidra!

2021 WMUK Patient-Doctor Summit
Ann is inviting those affected by WM to her 30 minute guided relaxation practice. Yoga Nidra meets live on Zoom the second Sunday of each month at 4:00pm U.S. ET – starting this January 9th. 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.
 
To learn more or sign up, RSVP through Ann’s website at the button below or email ann directly at: ann@anngraceyoga.com
 
RSVP FOR YOGA NIDRA HERE
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