The Waldenstrom's Weekly
January 27, 2023
Volume 3, Issue 2
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IWMF is dedicated to supporting and educating everyone affected by WM to improve patient outcomes while advancing the search for a cure. |
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- Special Announcements - |
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The 28th Annual IWMF Educational Forum will be a unique experience to learn from medical experts and WM community members around the world. Whether you join us in person or virtually, get in the St. Louis spirit! |
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World Cancer Day is February 4th |
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About World Cancer Day
From the Union for International Cancer Control (UICC)
World Cancer Day was established on the 4 February 2000 at the World Summit Against Cancer for the New Millennium in Paris, and the UICC has been leading this global uniting initiative ever since. The Day aims to promote research, prevent cancer, improve patient services, raise awareness and mobilise the global community to make progress in cancer care. By raising worldwide awareness, improving education and catalysing personal, collective and government action, supporters of World Cancer Day are working together to reimagine a world where everyone enjoys access to the cancer prevention, treatment and care that they need. Each year, hundreds of activities and events take place around the world, gathering communities, organisations and individuals in schools, businesses, hospitals, marketplaces, parks, community halls, in the streets and online.
Find out HERE how you can participate in the second year of the World Cancer Day, including downloading customisable posters, using new instagram filters and other social media tools. While doing so, please also consider spreading awareness about WM and your journey with the disease among your family and friends via email and social media, or doing your own activity to raise funds to benefit the IWMF (for more info, see: http://iwmf.com/fundraise-for-iwmf/).
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Hot off the Press! Recording Available |
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Treatments, Trials, and Hope –
for ALL Stages of Disease
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Presenter:
Dr. Jorge Castillo
Dana-Farber Cancer Institute
Boston, MA
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Disclaimer: This presentation is not intended to provide medical advice. Please consult with your medical team regarding your healthcare. |
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This Program was Sponsored by: |
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New Resource from Karger Publishers
Fast Facts Patient Infographic
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This brand-new patient infographic will help patients with WM understand their condition better ‘at a glance’, in a simple, digestible format. The resource covers the basics, how WM will affect you, what tests may be expected as well as exploring available treatment options. There is also a list of useful resources to help you on your WM journey. Check it out HERE, and Please note that some of the information is based on the UK's health care model (National Health Service).
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Sara McKinnie, IWMF Manager, Meetings & Partner Engagement, is sporting a shirt from our friends at WMUK and holding the Fast Facts Booklet, a companion piece to the infographic above.
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Save The Date: WM Veterans Discussion Group |
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The IWMF is proud to be hosting a special discussion group for WM community members who are Veterans.
On March 16th from 2-3 pm ET, topics for discussion will include: sharing experiences; navigating the Veterans Administration and more.
The meeting will be moderated by Ray Vance, IWMF Lifeline Volunteer and Vietnam Veteran.
Please register at the button below for the meeting. Once you register, you will receive a confirmation email in your inbox with the Zoom link.
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Sound Meditation Recording Available |
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Relax to the sound of Ann Grace's authentic Himalayan Singing bowls, with gentle verbal guidance to further calm the nervous system. According to sound healing traditions that have been passed down through both lineage and training, these bowls introduce a healing harmonic sound wave that helps dislodge stagnation on the cellular level, bringing the mind and body into perfect tune. Check out the recording HERE, and to be added to the monthly mailing list contact Michelle at [email protected] . |
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WM Community Corner
LLS Florida Blood Cancer Conference Recap
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From Jan Wieczerzak, IWMF South Florida Support Group Leader
Over 300 Blood Cancer patients, caregivers and medical professionals from around Florida gathered at the Fort Lauderdale Marriott Harbor Beach Resort on Saturday, January 14th for the 2023 Florida Blood Cancer Conference sponsored by the Leukemia & Lymphoma Society (LLS) . And, as you might expect, WM was well represented as over 20 Waldenström’s macroglobulinemia patients were in attendance.
The conference, held annually, was once again back to a live, in-person conference where everyone was able to interact directly, and meet in person. LLS, in an effort to keep everyone healthy, asked that everyone wear masks and respect the wishes of all attendees by following a color-based protocol where attendees self-identified the level of contact that was most comfortable for them.
In the first breakout session, WMers focused on a session conducted by Dr. Claudia Paba-Prada from Moffitt at Memorial. “Dr.“P” as she is known by many, reviewed many of the common symptoms, indicators and treatments of WM. In this high-level overview, Dr. P discusses all of the treatments currently being used by WM doctors around the world. This was a great session for those new to WM and a good refresher session for the more experienced patients.
First, as always, it was great to meet my fellow WMers and especially now that we are back in-person. Second, WMers are some of the most knowledgeable and thoughtful people - you really understand this disease and how it affects you. Third, as I attend more and more of these conferences, it is becoming clearer that the information provided needs to take into account that we all have different levels of knowledge about our disease. Some are new and need help in navigating through the learning curve, and others are so knowledgeable that they can almost be speakers at these conferences. Fourth, it was nice hearing that doctors are looking at “integrative medicine” as a way to help us address some of the things that make managing more challenging.
Above all, attending this and other conferences is a great way to learn more about WM and to become more knowledgeable about our disease.
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Four New Products Have Been Added to the IWMF Shop! |
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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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