The Waldenstrom's Weekly

June 7, 2024

Volume 4, Issue 23

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.

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- Special Announcements -

Hamberg Family Gives Second WM-NET Matching Gift

We have more great news to share with you!

In mid-April, one of our very generous donors offered an opportunity to help fund our new WM-NET initiative by establishing the $100,000 Hamberg Family WM-NET Challenge gift match for all gifts received in support of WM-NET before May 5, 2024. During our Educational Forum, Carl Harrington, IWMF Vice-Chair, Fundraising, announced that thanks to the incredible generosity of our donor community, we met that $100,000 challenge in just 10 days!

The Hamberg family was extremely grateful for the overwhelming response to their initial matching gift and committed to an additional $100,000 matching gift while we were together in Renton for our Ed Forum. Since then, we have already raised almost $10,000 in additional matching g ifts!

IWMF recently committed $2.5 million to support WM-NET, a new multi-institutional network for clinical and research programs dedicated to WM. This is IWMF’s largest single research grant and our first new initiative to be funded through our Accelerate the Cure (ATC) campaign. Led by Dana-Farber Cancer Institute (DFCI), the WM-NET brings together 18 major cancer centers and affiliates across the country to share knowledge and develop clinical trial protocols with the goal of providing patients with more treatment options. “Creating a U.S.-based network of WM clinicians and researchers will facilitate a more rapid translation of trial and study results into practice, as well as bring clinical trials closer to patients,” said Dana-Farber’s Jorge Castillo, MD, who serves as faculty director of the network’s steering committee.

Here’s how you can help:

If you’re diagnosed with WM, talk with your healthcare team about participating in a clinical trial that may be right for you.
Visit this link to show your support for this critical WM research – 100% of your gift will fund the new WM-NET Clinical Trials Network, and your gift will be matched dollar-for-dollar up to the first $100,000!

For more information, please contact Annette Preston, IWMF Director, Donor Engagement, by email at apreston@iwmf.com or telephone at 941-927-4963.

IWMF’s funding of the WM-NET is so important to the success of this clinical trials initiative. Thank you again to the Hamberg Family for their very generous gifts, and thank you to everyone for your support!

- Education -

reiki for cancer care with Sharon on Thursday, June 27th

Want to find out how reiki can support your cancer journey? Join Usui Reiki Master Teacher Sharon Rivet to learn more about this holistic healing system. Reiki can help manage pain and stress, strengthen immune system function, and energize the whole body. With Sharon’s guidance, we’ll cultivate a deeper awareness of our own energy through a few reiki exercises selected especially for the WM community. Come with all your reiki questions for Sharon, who was diagnosed with WM in 2018.

Lymphoma Research Foundation Workshop

June 15th in Washington, DC

Join the Lymphoma Research Foundation (LRF) at their Mid-Atlantic Lymphoma Workshop next Saturday, June 15, in Washington, DC. This free patient education program offers opportunities to learn the latest in lymphoma, including a WM breakout session and Q&A, and have your questions answered by experts. To learn more and to register, visit LRF's event page.

Free Lunch & Learn Webinar

Wednesday, June 19^th

12:00 pm - 1:00 pm ET

The National Bone Marrow Transplant Link (nbmtLINK) invites you to participate in a free telephone support program.

Speakers

Kathryn Smolinski, MSW, JD, FAOSW

Director, Legal Advocacy for People with Cancer Clinic

Associate Clinical Professor, Wayne State University Law School

Jennifer Leal

Board Certified Patient Advocate

AML/Stem Cell Transplant Survivor

Clinical Data Scientist

- Facebook Fundraising -

With nearly 3 million active monthly users, Facebook is a great place to raise money and awareness for causes like IWMF.

Creating a Facebook fundraiser is an easy way to raise money for IWMF because the setup is simple and cost effective. In addition to its accessibility, the Facebook platform’s larger user base means your campaign has the potential to reach a wider audience. Users can easily share their fundraiser with their network of followers, who can then donate and share with their network, and so on.

Setting up a Facebook fundraiser to celebrate your birthday or anniversary, or to honor someone else, is easy, and we have created a NEW step-by-step guide on our website HERE to guide you through the Facebook fundraiser set-up process.

If you need additional information about setting up a Facebook fundraiser, please do not hesitate to reach out to me at apreston@iwmf.com or 317-919-8238.

Thank you and happy fundraising,

Annette Preston, CFRE, CFRM Director, Donor Engagement

- Support -

Sound Meditation TODAY at 2:00PM ET

“This helps me escape from my tinnitus and body pain.”

-WM Patient

Relax to the sound of authentic Himalayan singing bowls, with gentle verbal guidance and healing chants to further calm the nervous system. Caregivers are more than welcome! Reach out to anngrace@iwmf.com to receive our Zoom invitation and follow-up recordings.

Gentle Mat Yoga - JUNE 12th at 11:00AM ET

Roll out your mat! This 60 minute all-levels mat class will move at a gentle pace, with mindful transitions up and down to the floor. Expect to use a range of tools of yoga such as breathing exercises, meditation, and yoga postures. We will leave time for a rest pose at the very end. No yoga experience necessary. Optional: stick around to connect with the WM wellness community after class. Reach out to Ann Grace if you’d like the Zoom invite or recording: anngrace@iwmf.com.