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

November 5, 2021

Volume 1, Issue 30

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

National Caregivers Month

EDUCATION

2021 IWMF Educational Forum
Follow up and Recording Updates

YAY! WE DID IT!
A note from IWMF Board Chair, Pete DeNardis:
 
“The 2021 IWMF Annual Educational Forum is now over. Hopefully, you had an opportunity to attend many, if not all, of the sessions, as there was a lot of great information shared by noted clinicians and researchers from around the world, along with opportunities to interact with fellow attendees. Whether you were able to attend or not, you now have the opportunity to view the sessions online!  You can access the videos, along with the corresponding slides on our homepage at iwmf.com. And again, a great note of thanks to the amazing medical professionals who took time out of their busy schedules to speak to us, to the IWMF Office staff for coordinating the schedules and activities before, during, and after the Ed Forum sessions, to the Ed Forum Committee for their hard work on planning the event and the activities, and to everyone who was able to attend the sessions live and “in virtual”. In case you’re wondering, the IWMF has already started planning for the 2022 Educational Forum, which will either be fully virtual as it was this year, or a hybrid online and live event, hosted in Seattle, Washington, from August 26-28, 2022. We hope to see all of you there – whether in person or virtual, or both!”

Presentations Now Available for On-Demand Viewing!

A Review of NCCN Guidelines for WM
Dr. Steven Treon, Dana-Farber Cancer Institute
Video Here and Slides Forthcoming

Familial WM
Dr. Mary Lou McMaster, National Cancer Institute
Video Here and Slides Here

WM & Fatigue
Larisa Patacchiola, LICSW, Dana-Farber Cancer Institute
Video Here and Slides Here

WM & Dermatology
Kate Mimken, RN, FNP, Colorado Blood Cancer Institute
Video Here and Slides Here

​

Ed Forum-Day 1

Triage Cancer Webinar for U.S. Patients:
Make Ahead Holiday Recipes that Nourish
the Body & Soul

triage webinars

Join Triage Cancer for a FREE webinar for patients in the U.S. Attendees will learn about the nutritional benefits of traditional holiday ingredients, holiday recipes that can be made ahead of time, and how to promote a healthy relationship with food during the holidays. All attendees will have the opportunity to ask the speakers questions in real time via a chat-box.

Presented by Julie Lanford, MPH, RD, CSO, LDN

REGISTER HERE

WMUK Patient-Doctor Summit
Saturday, November 13th
Register Today!

2021 WMUK Patient-Doctor Summit

From the WMUK:

Hear from inspiring speakers at the WMUK Patient-Doctor Summit on 13 November. Sandra will be talking about her experience of living with WM and advice she’s learnt from her time volunteering with other cancer patients. Don’t miss out, reserve your ticket today!

Click here to view the programme, which will cover the latest COVID-19 updates, physical and mental wellbeing, WM research, patient stories and much, much more. Register below!

REGISTER HERE

SUPPORT

WM Community Corner

Elizabeth Johnston-O’Connor of Connecticut (US) recently completed her first-ever sprint triathlon (swim 1/4 mile, cycle 10 hilly miles, then complete a 5k). Elizabeth’s sister and coach, Denise Cypher, was at her side.

From Elizabeth:
“I offer this picture as a possible source of encouragement for other WM patients, especially the newly diagnosed. I was first diagnosed in 2003 with IgM at 5423. Several clinical trials later and currently on Imbruvica, I was able to complete this triathlon. I was not the last one in my age group and I had a better time than I had dreamed of. Life after diagnosis can be good indeed.”

International Young WM Support Group
November 15th at 7:30PM U.S. ET

The International Young WM Support Group will be having their third meeting for patients and caregivers  under the age of 50! Attendees will join Co-Leaders Ryan and Deborah on Zoom for a caring and sharing session, which will last approximately one hour.
 
Monday, November 15th, 2021
7:30PM – 8:30PM U.S. ET
 
To be added to the mailing list for this group and to receive the Zoom link for this meeting, contact office@iwmf.com.

Bing-Neel International Support Group Meetings
November 21, 2021 at 12PM and 7PM U.S. ET

The IWMF will be hosting two Bing-Neel Support Group meetings on November 21. Two meeting times are available in order to have smaller groups and to accommodate many different time zones. The earlier meeting will be at 12 noon (U.S. Eastern Time, GMT-5) and the later meeting will be at 7:00pm.
 
The meeting format will be what’s called “Caring and Sharing” and will provide Bing-Neel patients and caregivers a chance to meet others who have a similar diagnosis from around the world.
 
We will also share a brief pre-recorded update from Dr. Jorge Castillo of Dana-Farber Cancer Institute. Patients who missed his earlier presentation (along with Dr. Steve Treon) may view it HERE.
 
The meetings will be hosted by our IWMF Bing-Neel Lifeline volunteers Julie Davidson (U.S.), Peter Freese (Australia), Stuart Quick (UK) and Eileen Sullivan (U.S., IWMF volunteer).
 
Registration is required for these meetings. After registering, you will receive a confirmation email containing information about joining the meeting. If you have any questions, please contact office@iwmf.com.
REGISTER FOR 11/21 AT 12:00PM ET HERE
REGISTER FOR 11/21 AT 7:00PM ET HERE
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