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The Waldenstrom's Weekly
September 29, 2023
Volume 3, Issue 36
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The IWMF mission statement is to support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) to improve patient outcomes while advancing the search for a cure. | |
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The October 2023 IWMF Torch (issue 24.4)
is Now Available!
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Hello to the world-wide WM community!
As 2023 winds down, we find ourselves still facing the same questions: “How do I cope with treatment side effects? Where do I get help when I’m feeling down or depressed? What new treatments are in the pipeline for WM? Where and how can I talk with other WMers?” These and many other questions always seem to be part of our lives, depending on where we are in our WM journey.
As you read the October issue of the Torch, you’ll find answers to those question and more. Since many WMers take BTK inhibitors, they will be particularly interested in Dr. Prashant Kapoor’s cover article on dealing with side effects from those drugs. Also, as part of our ongoing wellness series that includes listings of online resources, here you can find help with a variety of emotional issues, from coping with watch-and-wait or treatment, to tips for self-care when the going gets tough.
A larger than usual International Scene will let you wander the globe from your armchair and see how others in varying places also manage their WM. It’s especially difficult if you’re trying to do it in two languages and in two countries!
Join me in celebrating the successes of the IWMF and the energy and commitment of WMers around the world who raise money for the IWMF’s research and support programs. The Walk for Waldenstrom’s is going on as I write this, and we honor and thank all those who are taking part!
Much happiness and health to all!
Shirley Ganse
Editor, IWMF Torch
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IWMF CEO Attends NCCN Conference | |
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Newton Guerin, IWMF President & CEO, visits with Jeanette Schultz, NCCN Patient Advocacy Lead, during last week’s National Comprehensive Cancer Network Conference in San Francisco, CA.
The National Comprehensive Cancer Network is a not-for-profit alliance of 33 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. By defining and advancing high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.
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-Walk for Waldenstrom's - | |
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From Annette Preston, IWMF Director, Donor Engagement:
YOU have helped raise over $65,000 towards our $100,000 for the Walk for WM so far, AMAZING! We are in the HOME STRETCH of our month-long Walk for Waldenstrom's! Please join us the next couple of days with walking or another activity that brings you joy to help raise awareness and support of WM and the IWMF! If you are not able to participate in an activity, please share our Mightycause page or donate in honor or memory of a loved one. As an added bonus, donations can be made towards our Walks through December 31, 2023!
We invite you to join us in celebrating this great event and if
you are interested in hosting a Walk, there is still time. Please reach
out to me at Annette Preston at [email protected] for more information. In addition, If you set up your own fundraising page, you will be eligible to receive IWMF incentives below:
- Raise $100 and receive IWMF Walk for Waldenstrom’s T-Shirt
- Raise $800 and receive IWMF Walk for Waldenstrom’s T-Shirt and complimentary registration to a future IWMF Educational Forum
- Raise $2,000 and receive IWMF Walk for Waldenstrom’s T-Shirt, complimentary registration to a future IWMF Educational Forum, and a redeemable $300 travel certificate for you or a friend to attend a future IWMF Educational Forum
We have mailed out over 40 T-Shirts to folks who have raised over $100! Thank you to all who have participated, and for helping to make this event a huge success!
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WALK FOR WALDENSTROM'S SPOTLIGHTS
Paul Kitchen- Still Walking for Waldenstrom's!
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Paul Kitchen, IWMF Board Member, is STILL walking as far as he can each day of September. His goal was to average between 5 and 6 miles a day walking a distance equivalent to travelling from his home in Rothesay, New Brunswick, Canada to Calais, Maine in the USA. Paul has been tracking his progress HERE!
Great job, Paul! Stats below as of September 28th, 2023:
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David Kahn- Walk for WM SUPERSTAR! | |
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David Kahn, IWMF Board Trustee, completed a 10 mile Walk for Waldenstrom's at the beginning of September. Not only that, but David has the HIGHEST individual fundraiser so far with OVER $9,500 raised! From David, “ My friends and family have been so supportive during my WM journey, and their continued encouragement and love have meant so much to Penny and me”.
WELL DONE DAVID!
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Saturday, October 21st
Hear from experts, meet patients and families and talk to healthcare professionals at the FIRST EVER European Patient Forum co-hosted by IWMF and WMUK!
We’ll be live in Birmingham (United Kingdom) and Amsterdam (The Netherlands) covering everything you want to know about living with WM.
Our joint sessions will be streamed between our two locations, and will conclude with an ‘Ask the Healthcare Professional’ panel where you may ask your questions LIVE to a panel of nurses, doctors and allied healthcare professionals from across Europe.
The event is an exciting first-of-its-kind for both our organisations, combining our resources to provide even MORE expert advice and personal support for people affected by WM across Europe.
Click HERE for more information, agenda & registration.
We hope you can join us!
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Hot off the Press Recording Available! | | |
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Everything you wanted to know about Sexual Health & Cancer but were afraid to ask!
With Dr. Sharon Bober
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Did you miss this important presentation last week? Join Dr. Bober from Dana-Farber Cancer Institute and Lisa Wise, IWMF Vice-Chair of Information & Support, as they open the door to a topic completely new to the IWMF!
Viewer Testimonials:
- This was such a great session. I never thought we would get this kind of information from IWMF. Pleasantly surprised.
- I've watched many offerings that IWMF sponsors. This one was a 4-star one.
Presentation Resources
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Recording Available! Yoga Nidra | |
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Enjoy a 30-minute guided relaxation and visualization practice to reduce stress levels, sleep better, and elevate well-being.
Contact Ann to be added next month at [email protected]
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From Bob Ulkus, IWMF Connecticut Support Group Co-Leader:
In late August, twenty-one members of the IWMF CT Support group gathered in person on a beautiful summer day for the first time since 2019. Thirteen of those in attendance were individuals who had never met another WM’er before. It was very exciting to see people exchanging information, asking questions, and learning about each other. The outdoor setting, under a covered pavilion, provided the ideal environment to socialize and enjoy a delicious buffet meal. Two and a half hours later, with many new friendships formed, it was time to say goodbye until our next virtual meeting. We all appreciate the opportunity IWMF offers to connect through support groups. Thank You IWMF!
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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 | |
IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | [email protected] | 1-941-927-4963 | | | | |
