The Waldenstrom's Weekly

September 6, 2024

Volume 4, Issue 34

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.

- Special Announcements -

European WM Patient Forum - Last Chance to Register!

🌍 Don't miss the European WM Patient Forum!

Join us virtually or in person in London for an insightful event on WM. Hear from clinicians, researchers, and people living with WM on important topics and connect with the WM community.

Registration closes on September 18th, so register today!

IWMF Annual Report Makes Flipbook Debut

You may have received IWMF’s 2023 annual report in your mailbox, but have you seen the digital version on our website? You can open a PDF on your computer or phone, and it’s now available as a flipbook, so you can turn pages and flip back and forth, just like a print magazine.

This new format also features live links, so when you read “Journey to a Cure: Our Progress and the Way Forward” on p. 6, you won’t have to hunt for URLs in your print copy and type them into your browser. Simply click on the links in the flipbook to link directly to web pages, reference articles, and even videos! This new format makes it easy to share the annual report too. Just open the flipbook and click on the share icon in the toolbar where you’ll also find useful tools for navigating (e.g., zoom in (+) and out (-)) the pages of the report. 

Can't find your print copy of the Torch? No problem! The past three issues are also available as flipbooks on the Torch page of our website. Be sure to take a look! 

2024 Walk for Waldenstrom's Update

The Walk for Waldenstrom's is in full swing, and it's not too late to join the movement! Because of your generosity, we have already raised over US$20,000 for this event! We have 5 local community walks planned (check those out here, including one tomorrow in Sarasota, FL!), and we have many teams and individual fundraisers on the leaderboard, incredible!

The purpose of this event is to come together and accelerate the search for a cure. If you would like to get involved and show your support for the Waldenstrom's community, you can participate in a variety of ways. You can walk or do other activities that you enjoy, in person or virtually. Whether you're a patient, caregiver, friend, or family member, we invite you to participate.

We’ve partnered with Esri, a global leader in geographic information system (GIS) software, to help us track our collective journey around the world. Every step you take will be added to our global movement, and we have already walked over 4,000 miles together! Sign up here!

Rally your networks, raise awareness and funds, join local walks, and earn prizes for your efforts! Let's walk together for a cure!

World Lymphoma Awareness Day 2024:

It’s Time for Some Honest Talk about How We’re Feeling

Are you ready for World Awareness Lymphoma Day on September 15th? For the 20^th anniversary of this day dedicated to raising awareness about lymphomas and the needs of patients and caregivers, the Lymphoma Coalition, a global network of lymphoma patient organizations that includes IWMF, is focused on supporting the emotional needs of our community. Because the truth is, living with WM can be hard and it affects how people are feeling.

Visit https://lymphomacoalition.org/world-lymphoma-awareness-day/ to learn more about how you can participate. 

WM Weekly DID YOU KNOW?

Did you know that IWMF has a wonderful informational publication about WM that has since been tailored to both doctors AND nurses in separate booklets?

You can find Essential Information: A Patient's Guide, Essential Information: A Nurse's Guide, and Essential Information: A Physician's Guide at our publications webpage here. Download and share it with your care team, and if you would like a free copy mailed to you, contact the IWMF Home Office at office@iwmf.com or 941-927-4963.

- Education-

Registration Open for Upcoming Webinars

Ask and you shall receive! Back in June, a conversation began on IWMF-CONNECT on the topic of Continuing Care Retirement Communities, or CCRCs. A lot of interest was generated on this topic, so we have a 2-part upcoming series to further explore this ins and outs of senior living options. For more information about each session and speakers, click the registration buttons below!

Researchers and Physicians Meet in Prague for IWWM-12

The greatest minds in WM will converge October 17th to October 19th, 2024, in Prague, Czech Republic for the 12th International Workshop on Waldenstrom’s Macroglobulinemia (IWWM-12).

The IWWM-12's goal is to enrich attendees' comprehension, encourage research breakthroughs, and cultivate lifelong partnerships that will lead to more effective treatments and, ultimately, a cure for Waldenstrom’s macroglobulinemia. 

Presentations at the IWWM-12 will be geared toward physicians and researchers with an advanced knowledge and understanding of WM but everyone can expect to benefit from the information and advances that will result from this prestigious gathering.  

WM Breakout Session at LLS Conference

Expert insights await! Dr. Prashant Kapoor from Mayo Clinic (Rochester, MN) will present on WM at the Leukemia & Lymphoma Society National Virtual Blood Cancer Conference. Mark your calendars for September 14th at 1:15pm (ET) and register for free: LLS.org/NationalBCC24 .

Triage Cancer October Conference

Feeling overwhelmed by all of the practical and financial issues that come with a cancer diagnosis? Our partner Triage Cancer is hosting a FREE conference on October 25 & 26 for individuals diagnosed with cancer, caregivers, and oncology health care professionals.

T’ai Chi and Qi Gong Next Tuesday at 2:00PM ET

Join Rami Rones next Tuesday at 2:00PM ET to safely experience the ancient mind-body therapies of T’ai Chi and Qi Gong. Slow, low-impact movements can increase muscle mass and bone density, ease aches and pains, gently stretch muscles, and improve your balance. Sign up here to receive more information and the Zoom invite before class.

Strength Training with Sharon

Wednesday, September 11th at 1:00PM ET  

Join ACE Certified Personal Trainer Sharon Piotrowski, who is also a WM community member, for a strength training workout for all fitness levels. Strength training can help us age more gracefully by improving mobility and bone density, maintaining or increasing muscle mass, and decreasing the risk of falling. Have small hand weights or household items like water bottles handy (optional). Sign up here to receive more information and the Zoom invite before class.

September Wellness Calendar

WM Community Corner: Walk for WM Spotlight

The IWMF Philly (PA) Support Group is hosting a Walk for Waldenstrom's on Sunday, September 15th, at 2:00PM ET. The walk will take place at the beautiful Stoneleigh Natural Garden in Villanova, PA. For more information or to RSVP, please email Lisa at wiseplace@gmail.com. We encourage local community members to join us in raising awareness about WM!

Want to buy a 2024 Walk for Waldenstrom's T-Shirt? Get yours at the IWMF Shop!

Note: For individual Walk for WM fundraisers who raise $150 or more, you will get a t-shirt for free!

Accelerate the Cure is much more than a campaign slogan. It’s our next 31 million USD effort, over five years, to find a cure and support those with WM and their caregivers. Global researchers have a new set of WM research targets, and they are afire with excitement. We believe we can find that cure, and we hope 100% of our WM family will contribute! IWMF has three Research Opportunity Funds for your consideration: One for global research, one for WM-NET to accelerate clinical trials, and one that funds the next generation of researchers. We have a fourth fund that enhances our ability to be the world hub for WM education and support. In the months ahead, through this weekly and the Torch, we will illustrate the research progress that is rapidly accelerating through donor investment.

We encourage you to visit our Accelerate the Cure page on IWMF’s website to learn more and perhaps contribute. We invite conversations. Contact us at: office@iwmf.com.

Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on "download photos" at the top to view all content. For more information, email info@IWMF.com or visit www.IWMF.com