The Waldenstrom's Weekly
March 31, 2023
Volume 3, Issue 11
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Thank you all for your continued efforts to provide opportunities for our community members to have financial assistance for second opinions from WM specialists. -E.Q.
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- IWMF Educational Forum - |
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$199 Rate EXTENDED through April 7th! |
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Although you can attend virtually, the Ed Forum is a unique opportunity to meet, IN PERSON, world-renowned WM clinicians and researchers and spend time with fellow patients and caregivers who are also experiencing the WM journey. GOOD NEWS- The $199 rate has been extended to April 7th! Register today!
For those attending in-person, be sure to peruse the fabulous St. Louis Gateway Guide, which was created by our incredible Ed Forum Committee volunteers!
Please Note: Advance verification of COVID-19 vaccination will be required for all in-person attendees for their own safety, as well as the safety of others. In-person registered attendees will receive additional details on Ed Forum health and safety protocols. Be sure to consult with your healthcare team when deciding to attend physically. Your health is our priority. Masking is strongly recommended (but not required) for in-person attendees.
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The April 2023 IWMF Torch (issue 24.2)
is Now Available!
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Hello to the WM community around the world!
I hope this new issue of the IWMF Torch finds you in relatively good health and in good spirits!
Our cover article in the April Torch focuses on patient preferences in WM treatments. Do people prefer infusions with a definite end or daily pills? Chemoimmunotherapy or BTK inhibitors? What other properties do patients find important regarding their treatment? Drs. Josephine M. I. Vos and Karima Amaador of the Amsterdam University Medical Center have tackled these questions, and in an interview with Torch Science Editor Glenn Cantor, the two doctors explain their research’s importance and results.
Along with our regular medical news on WM research and funding, in this issue we are beginning a regular focus on living well with WM. This will include physical, emotional, and financial wellness, and we will cover these topics with a variety of articles in the future. Included here are three articles about various physical activities enjoyed by several WM patients: finding peace and pleasure being on the water; biking as a passion, with a goal of going “around the world” in terms of distance; and exercising and socializing with lawn bowling.
We hope you enjoy the variety of articles on offer for April, and here’s hoping we all can happily thrive and live well with WM.
Best regards,
Shirley Ganse
Editor, IWMF Torch
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Article: Dana-Farber Researchers Use Machine Learning to Understand Rare Familial Blood Cancer |
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Researchers at Dana-Farber Cancer Institute (Boston, MA) have put together a data atlas that includes a range of genomic, transcriptomic, epigenetic, and clinical data from patients and healthy donors to try to understand familial WM.
Check the article out HERE.
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Medicare Reforms Passed Through the
Inflation Reduction Act
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Speaker:
Amy Niles
Chief Advocacy and Engagement Officer
PAN Foundation
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BeiGene Webinar: Normalizing the Emotions of Cancer... During a Not So Normal Time
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The emotional adjustment to cancer can bring on a wave of emotions. This interactive webinar will explore normal distress and emotions experienced by patients and caregivers, along with the need to sometimes seek additional support from a mental health professional. Join BeiGene and Elizabeth Archer-Nanda, DNP, APRN, a psychiatric clinical nurse specialist with Norton Cancer Institute's Behavioral Oncology Program and Immediate Past President of the American Psychosocial Oncology Society, for this important discussion. Participation is free and live questions are welcome! |
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THIS WEEKEND!
International Bing-Neel Support Group Meetings
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There will be two meetings of the IWMF Bing-Neel Support group THIS SUNDAY, April 2nd. Bing-Neel Syndrome is a very rare complication of WM/LPL in which the cancer/WM cells infiltrate the brain and/or spinal fluid. There will be two meetings so that we can accommodate many time zones. Dr. Shayna Sarosiek from the Bing Center For WM at the Dana Farber Cancer Institute in Boston, will pre-record a special presentation. Questions for the doctor were collected in a recent survey of members of the Bing-Neel Support group. Dr. Sarosiek will do her best to incorporate those into her presentation.
You will need to pre-register for a meeting by using either of the two blue links below:
Questions? Contact one of the following:
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Recording Available! WM Sound Meditation |
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Relax to the sound of Ann MacMullan's authentic Himalayan Singing bowls, with gentle verbal guidance to further calm the nervous system. Contact [email protected] to be added to future notifications for this special monthly offering!
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To sign up for classes, contact Shelly at [email protected] and please specify which class(es) you would like to be added to. |
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The information about this clinical trial is intended to be helpful and educational, but it does not constitute an endorsement by the IWMF and is not meant to be a substitute for professional medical advice. The IWMF strongly encourages discussions with their health care professionals about specific medical conditions, side effects, and treatments.
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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. 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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IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | [email protected] | 1-941-927-4963 |
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