The Waldenstrom's Weekly
March 17, 2023
Volume 3, Issue 10
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This is my disease, my responsibility to be informed and involved. -S.S.
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- IWMF Educational Forum - |
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Come Meet Us in St. Louis at the Ed Forum! |
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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. Still deciding? Catch the $199 registration rate before it increases to $275 on March 29th!
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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.
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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New Article from Lymphoma Hub:
Treatment landscape for R/R WM
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Lymphoma Hub has compiled an overview of the current treatment options for Relapsed/Refractory WM and associated factors that influence treatment choices in the relapsed setting. Check out the article HERE.
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IWMF and Patient Access Network (PAN) Webinar
March 28th, from 4:00PM - 5:00PM U.S. ET
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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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Join our webinar on March 28th to learn about the Medicare reforms that were passed in August 2022 as part of the Inflation Reduction Act. These reforms have the potential to significantly lower out-of-pocket costs for prescription medications for individuals on Medicare.
Bonnie Beckett, IWMF Public Policy Liaison, will help to get YOUR questions answered during the Q&A portion of the program. Please submit your questions in advance when you register below.
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Triage Cancer Webinar: Managing Medical Bills
March 22, From 11:30AM - 1:00PM ET
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Learn practical tips to manage medical bills and prepare for tax time in the United States! Triage Cancer will also cover how to appeal medical bills, find financial assistance, and important terms to know when seeking help. |
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WM Community Yoga Instructor Ann MacMullan Just Upgraded her Title to Yoga Therapist! |
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Since 2021, Ann MacMullan has collaborated with the IWMF to create the WM Wellness Community, featuring a range of group classes on Zoom to address common side effects of WM and WM treatments. This experience served as hands-on learning for her to complete her certification. The focus of Ann's final clinical practicum was on yoga therapy and sound therapy as an intervention for WM, and included a comprehensive curriculum for the specialty population with this rare lymphoma. Ann is proud to continue to work directly with the IWMF to provide a safe space to move and breathe for those affected by WM.
Congrats Ann, and THANKS for all you do for the WM Community!
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WM Sound Meditation
TODAY at 2:00PM U.S. EDT
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Relax to the sound of Ann'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.
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International Bing-Neel Support Group Meetings
TWO Opportunities to Connect on April 2nd, 2023
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There will be two meetings of the IWMF Bing-Neel Support group on April 2. 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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Note: We will not be having a WM Weekly Newsletter next week, so we will resume on March 31st. Take care and stay Waldenstrong in the meantime! |
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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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