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The Waldenstrom's Weekly
October 20, 2023
Volume 3, Issue 39
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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. | |
TOMORROW! CATCH THE LIVESTREAM! | |
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Looking for something to do TOMORROW, October 21st? The European WM Patient Forum will be LIVESTREAMED though the WMUK YouTube Channel!
Catch a front row seat to learn from WM experts and patient speakers LIVE, and snag the opportunity to ask questions in real time through WMUK's special event website. You can take a peek at the agenda here.
To access the sessions, complete four easy steps:
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Sign up online at www.wmuk.org.uk/european-wm-forum-2023 and be sure to click on registering for the UK event, or scroll all the way to the bottom of the webpage linked above.
- Pay the online registration of £5 for "virtual attendance"
- Receive your link to watch the sessions online
- Interact with the presenters through live Q&A
DON'T MISS OUT ON THIS SPECIAL OPPORTUNITY!
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We invite you to join us on the IWMF 2024 Post Ed Forum - Alaska Cruise! We have made arrangements with Royal Caribbean International for an eight day/seven-night Alaska Cruise aboard the Quantum of the Seas on May 6 -13, 2024. | |
- Walk for Waldenstrom's - | |
Members of the IWMF Eastern Massachusetts Support Group met last weekend to have a Walk for Waldenstrom's in Waltham, MA. The group has raised nearly $1,000 dollars, thanks to all who have contributed! | |
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This Thursday, October 26th, we’re inviting you to a webinar all about fitness and the power of exercise! Find out how lifestyle changes like increasing your fitness level may help you live better with Waldenstrom’s. Join Sharon Piotrowski, certified Personal Trainer diagnosed with WM in 2019, to learn more. Sharon has competed in 11 half marathons, 6 sprint triathlons, and over fifty 5k races; she is the co-leader for the IWMF Sarasota Support Group, a Lifeline Support Volunteer, and the creator of the WM Patient Perspective Video Series.
*Bring small hand weights or water bottles.
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IWMF Global Educational Webinar
Wednesday, November 8th at 2:00PM U.S. ET
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Bone Marrow Transplantation and Cellular Therapy – Past, Present, and Future for Blood Cancer and WM Patients | |
On November 8th at 2:00 PM U.S. Eastern Time, Join Peter DeNardis, IWMF Board Chair, for an hour discussion and Q&A with Dr. Fred Appelbaum. Dr. Appelbaum is the Executive Vice President and Clinical Research Professor at Fred Hutch Cancer Center (Seattle, WA) and author of “Living Medicine: Don Thomas, Marrow Transplantation, and the Cell Therapy Revolution” (2023). Dr. Appelbaum works with WM patients in the context of stem cell transplantation, and was involved with the very first clinical trials of anti-CD20 antibodies (rituximab) and their early application to WM. | |
*Please note that we are using a new platform called Zoom Sessions for this webinar, so please be advised that you will need to either a) register using a Zoom account, OR b) you will need to verify your email address with a numeric code upon registration. Contact the office for any questions at office@iwmf.com. | |
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BeiGene Webinar on November 2nd at 2PM US ET
Support for Cancer Caregiver
The MVPs of the Cancer Treatment Team
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From BeiGene:
Caring for someone with cancer, while incredibly meaningful, can lead to significant emotional, physical and social distress. Please join us in learning about caregiver distress and the positive benefits that can emerge throughout the experience. We will explore communication and self-care tools that caregivers can use to navigate care, complex treatment decisions and day-to-day life challenges. Important legislation that could provide better education and support for all caregivers will also be discussed along with a call to action to better integrate caregiver support into quality cancer care.
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"We can live with WM and still have a good life,” says one WM friend, who described the beneficial effect that our wellness classes had on her ability to get around during a recent trip to Italy. She was able to climb up and down stairs, keep her balance on uneven terrain, and walk a good deal more. Come find out how Cardio Flow has helped others with their PN, fatigue, and overall well-being TODAY at 2pm EDT. Email anngrace@iwmf.com to receive the Zoom link. | |
IWMF & NORD Financial Assistance Program | |
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The IWMF is proud of our first financial assistance program in partnership with The National Organization for Rare Disorders (NORD)!
The IWMF Travel & Lodging (T&L) Assistance Program has been providing individuals diagnosed with WM, or those being evaluated for the disease, with financial assistance related to second opinion or diagnosis confirmation appointments. With WM being a rare disease, having a second opinion with a WM specialist can be critical to confirm diagnosis and course of treatment.
The T&L Program also offers financial assistance for travel related to clinical trial eligibility screening or first clinical trial visit (not being paid for by trial sponsor) up to the program's established financial limit.
Community members inside AND outside of the U.S. may qualify, apply today!
CLICK HERE for the NORD flyer
For further information or to apply for this program, contact NORD M-F between 8:30am - 6:00PM EDT:
203.308.5902 or IWMFTravel@rarediseases.org
Please note that funding is limited. If you would like to contribute to the IWMF and our T&L Fund, please contact Annette Preston, IWMF Director of Donor Engagement, at apreston@iwmf.com.
This is a special opportunity to help other WM patients!
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New CancerCare U.S. Resource: myTRIAList | |
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From CancerCare:
This free, online tool helps patients learn more about clinical trials, find clinical trials available for their diagnoses and see testimonials from other patients. In this way, patients can know much more about their treatment options when they need timely information the most. Check it out HERE.
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This Sunday, October 22nd! | |
"Much needed and appreciated rest,” says one WM friend navigating multiple cancer diagnoses, after practicing Yoga Nidra. This Sunday at 4pm EDT, try our guided relaxation and visualization practice to reduce stress levels, sleep better, and elevate well-being. Email anngrace@iwmf.com to receive the Zoom link. | |
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Corrected Link from Last Week:
Mental Health & Cancer Recording From CSC
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Last week, we realize that the link we had shared to Cancer Support Community's (CSC) recorded Mental Health & Cancer presentation needed a password to retrieve the video. We have contacted Cancer Support Community, and the recording is above from October 10th without needing the password. Thank you for your understanding! | |
Cyndi Powers and Sara McKinnie celebrated 40 years of the 1983 Orphan Drug Act this week at the National Organization for Rare Disorders (NORD) Summit in Washington, DC. | |
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 info@IWMF.com or visit www.IWMF.com | |
IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | info@iwmf.com | 1-941-927-4963 | | | | |
