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The Waldenstrom's Weekly
September 22, 2023
Volume 3, Issue 35
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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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THIS SUNDAY, September 24th is World Cancer Research Day!
The IWMF supports the advancement of knowledge about WM by providing research grants for basic biomedical research into the origins, clinical manifestations, treatments, and potential future cures for WM.
You can support research into WM or find out more by visiting https://iwmf.com/research-strategy/.
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-Walk for Waldenstrom's - | |
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From Annette Preston, IWMF Director, Donor Engagement:
YOU have helped raise over $60,000 for the Walk for WM so far, INCREDIBLE! Please join us this September to help raise awareness and support of WM and the IWMF through our Walk for Waldenstrom’s. We have coordinated our Walks throughout September to coincide with Blood Cancer Awareness month.
Thank you to all who participated last weekend in both Sarasota (top photo) and Minnesota/Wisconsin (bottom photo) walks. THIS SUNDAY is the rescheduled Mission Viejo, California walk with two support groups joining forces led by Julianne Flora-Tostado & Marla Chao. In addition, there will be a walk in Pittsburgh, PA led by the local support group for PA/WV/OH.
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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
Thank you for helping to make this event a huge success!
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WALK FOR WALDENSTROM'S SPOTLIGHT
Julie Richardson
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Julie Richardson, IWMF Fundraising Committee Member, has been walking 5K a day throughout the month of September to raise money for WM research. Julie has raised $380 so far!
From Julie:
"I'm fortunate to live in a medical research mecca. Fortunate to have good health insurance. Fortunate to have an incredible team of family and friends, a brilliant medical team, and an employer who continues to support my health journey. All that, and a very successful four rounds of chemo aside, I would love to be able to say that WM has a cure. There are amazing minds working on this very thing, and what they need most of all is funding to continue their work. Cancer has taught me a lot. More than anything, it's taught me that hope is real. And that life is better done together."
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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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NEXT THURSDAY, September 28th!
1:00 - 2:30PM U.S. Eastern Time
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Over 100 registered! Join Rami Rones NEXT THURSDAY, September 28th to learn about and explore how T'ai Chi and Qi Gong can support those affected by Waldenstrom's.
Expert Bio: Ramel "Rami" Rones has served as a consultant of Mind-Body Therapies at Dana Farber Cancer Institute, Harvard Medical School, Boston Children's Hospital, Mass General Hospital and Tufts Medical Center; he has also co-authored numerous scientific publications
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CancerCare Webinar:
Blood Cancer Awareness: Resources for Support
September 28th, from 12:00PM to 1:00PM ET
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CancerCare and the Leukemia & Lymphoma Society (LLS) will host an awareness event to provide an overview of resources for people diagnosed with blood cancer and their caregivers. CancerCare and the LLS will discuss programs and services available to participants. A CancerCare oncology social worker will discuss coping with blood cancer as a patient and a caregiver. Participants can ask CancerCare and LLS questions to learn more about accessing resources and programs. | |
Lymphoma Research Foundation Ed Forum | |
2023 North American Educational Forum on Lymphoma
DATE: Friday, October 6 – Sunday, October 8, 2023
LOCATION: New York Marriott at the Brooklyn Bridge
In-Person Program – There will be no online/hybrid option.
There will be a WM breakout with Dr. Jorge Castillo of Dana-Farber Cancer Institute. For details and registration, click HERE.
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Cancer Support Community Webinar
Mental Health & Cancer
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From Cancer Support Community (CSC):
Mark your calendar for October 10, 2023, for an informative discussion on the intersection of mental health and cancer. CSC's Senior Director of Education and Programs, Rachel Saks, will be joined by Duke University's Dr. Brandon Knettel to talk about this important topic.
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THIS SUNDAY! Yoga Nidra at 4:00PM U.S. ET | |
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Join a 30-minute guided relaxation and visualization practice THIS SUNDAY at 4:00PM U.S. Eastern Time to reduce stress levels, sleep better, and elevate well-being.
"When I practice Yoga Nidra with Ann Grace, it feels like "the pause that truly refreshes." Ann Grace's calming voice, her singing bowls and her clear, non-judging words help me settle into being in this present moment. The semi-sleep state that soon arrives in my body and the spaciousness of my breath give my body and mind an opportunity to rest from whatever the day may have brought. By the recording's end, I re-enter the world differently, more settled and refreshed. A daytime yoga nidra practice often gives me an added bonus: I sleep better that night! Thank you, Ann!" - Karen D.
Contact Ann for the Zoom link at [email protected]
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Research studies have shown that sound meditation with singing bowls reduced tension and increased feelings of spiritual well-being in its participants, and could be useful for those experiencing fatigue, chronic stress, depression or anxiety.
Join us! Contact Ann MacMullan to be added to the mailing list for next month at [email protected]
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The IWMF offers two Internet-based group discussion forums where you can communicate with others, share experiences and insights, exchange information, and get emotional support. The discussions typically focus on WM diagnosis, treatments, research, prognosis, side effects and related conditions. Thousands of patients and supporters from all over the world are signed up, come join us by clicking the links below!
A BIG thanks to Julianne Flora-Tostado (IWMF Support Group Leader) and Meg Mangin (IWMF Board Trustee) for their roles as moderators of these important resource groups, as well as other volunteers who provide support to community members!
For help navigating IWMF CONNECT or Facebook, contact [email protected].
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On Monday September 25th, U.S. Patients can order four free home covid tests. They will be delivered through the U.S. Postal Service, and you can order yours on THIS website next week! | |
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 | | | | |
