The Waldenstrom's Weekly

August 9, 2024

Volume 4, Issue 30

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 -

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.

August Is National Make-A-Will Month

Did you know August is National Make-A-Will Month? By creating your will this month, you can get peace of mind for the future, protect your family, and support the future of the IWMF. Nearly 67% of American adults don't have a will, and we’re sharing a free, online will-writing tool from FreeWill so 100% of our IWMF community can protect the people and causes they love.

2024 Walk for Waldenstrom's

Now that the 2024 Walk for Waldenstrom’s has officially launched, we're lacing up our shoes, starting fundraisers, and spreading the word that we will find a cure. Every year, during Blood Cancer Awareness Month, September 2024, we come together to show our support and raise awareness. Do you remember when man first walked on the moon? Well, your one small step will be one giant leap toward 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. For the first time, we have pledged to collectively walk enough steps to circle the globe, symbolically encouraging international research partners to report their own leaps of progress. All funds raised go to our new five-year, Accelerate the Cure Campaign.

Visit the IWMF website to learn more and get involved. The 2024 Walk for Waldenstrom’s is waiting for you! 

Brushes with Cancer Spring 2025 Applications OPEN!

Brushes with Cancer is a unique and transformative program sponsored by Twist Out Cancer that pairs artists with individuals touched by cancer to create meaningful pieces of art that reflect their journey, emotions, and experiences. Through this collaborative process, Brushes with Cancer aims to provide healing, support, and empowerment to both the artist and the individual affected by cancer. You can learn more about the program here.

- Education-

Watch & Wait Recording Available!

Join our friends at The Patient Story for the recording of a webinar featuring two experts in the field of cancer care, Dr. Jonas Paludo from Mayo Clinic, Rochester MN, and Dr. Shayna Sarosiek from Dana-Farber Cancer Institute, Boston, MA. Dive deep into the crucial topics of “Watch and Wait” and mental health, gaining insights that could transform your understanding and approach to cancer treatment.

Watch the Replay Here.

Partner Spotlight:

Resources from Leukemia & Lymphoma Society

A new Bloodline podcast episode from the Leukemia & Lymphoma Society (LLS), features the topic of exercise. Moving the body can be an important part of cancer recovery, both physically and emotionally. In this episode, Dr. Shernan Holtan of Roswell Park Comprehensive Cancer Center and blood cancer survivors, Paul and Joe, share about a clinical trial they developed to introduce a personalized strength training program to patients and caregivers.

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

Wednesday, August 14th at 4:00PM ET

Join LLS Canada and healthcare expert and researcher, Dr. John Kuruvilla, for a one-hour presentation where he will discuss diagnosis and approach to managing Diffuse Large B-Cell Lymphoma (DLBCL), a rare transformation of WM. Register Here.

Save the Date! 30th Annual IWMF Ed Forum

IWMF Support Groups, International Affiliates,

& LIFELINE 1:1 Peer Mentor Program

IWMF Regional & Specialty Topic Support Groups offer information, education, mutual support, and the opportunity to connect with others affected by WM. When attending a peer-led meeting, you will meet others who share a WM diagnosis as you build a strong, local, supportive network. For international meetings, please contact our International Affiliates listed HERE.

IWMF is proud to have a volunteer-based telephone and e-mail LIFELINE intended to address specific WM questions from our community members. The LIFELINE is staffed by patients with WM and caregivers who are willing to share their experiences in specialized areas. These volunteers do not give medical advice or treatment recommendations. However, LIFELINE volunteers have personal, and often extensive, experience on the topic(s), which they support, and they may be able to assist you in accessing better information or to refer you to experts in specific areas.

Check out the LIFELINE directory HERE.

Are you interested in being a LIFELINE volunteer? Contact office@iwmf.com.

Please Note the NEW Date! Sound Meditation

Friday, August 16th at 2:00PM ET (please note new date).

Change your frequency! Relax to the sound of authentic Himalayan Singing bowls, with gentle verbal guidance and healing chants to further calm the nervous system. Reach out to anngrace@iwmf.com to register.

Young WM Support Group Meeting

Monday, August 12th at 8:00PM U.S. ET

The International Young WM Support Group will be having a meeting on Monday for patients and caregivers under the age of 50. Attendees will join Co-Leaders Deborah and Jason on Zoom for a caring and sharing session, which will last approximately one hour.

Monday, August 12th

8:00PM - 9:00PM U.S. ET

To join the mailing list for this group, contact Shelly: Mpostek@iwmf.com

In Case You Missed It: Mindfulness Meditation

Take a few minutes for yourself— stop “doing” and start “being!” 

Studies show that use of mindfulness among people with cancer significantly reduced psychological distress, fatigue, sleep disturbance, pain, and symptoms of anxiety and depression. Now available ad-free on Vimeo!

WM Community Corner

The IWMF Home Office team have been meeting in person this week to discuss progress on our 2024 Operating Plan and to coordinate 2025 initiatives for research, education, and support!

REVISED August Wellness Calendar

Want to show the world you are Waldenstrong? Get your Swag at the IWMF Shop!

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