The Waldenstrom's Weekly

February 9, 2024

Volume 4, Issue 6

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.

- Research -

Research Study Outcomes for Caregivers

Online Educational Resource for Caregivers

The Healthy Communication Practice™ program is an online educational resource created to support blood cancer caregivers that was funded by The Leukemia & Lymphoma Society and developed in partnership with a research team at the University of Florida. It is now available at no cost to you.

Caregivers can learn key communication skills that are critical to providing care, such as:

• Sharing and receiving online cancer information
• Communicating with doctors
• Talking to family members about challenging but important caregiving issues

Caregivers will have the opportunity to learn and practice these skills by hearing other caregivers share their stories of blood cancer caregiving.

You can read here about the development and testing of this educational resource, which included recruitment through the IWMF. Thanks to all WM caregiver community members who participated in this important study!

Familial Research Study Open

About the Study from Mayo Clinic:

There is evidence that blood and lymph node disorders cluster in families. The purpose of this research study is to identify inherited factors (genes) or substances (environmental) that make some people more likely to develop these disorders. To do this, we will look for abnormalities in the genetic material (DNA) taken from blood samples. We will also ask about environmental exposures and one's medical history to help determine whether certain substances or medical conditions increase the risk of blood and lymph node disorders. 

Check out the brochure HERE for details about what is involved in participating in this important study. This study is open to patients in the United States. Patients outside of the US may be considered if they come to Mayo Clinic Rochester for care. To enroll or for questions, contact 855-899-0693 or Catherine Erding, Clinical Research Coordinator, at [email protected].

- IWMF Ed Forum -

We are only 12 weeks from the kickoff of the 2024 Ed Forum! Have you secured your spot yet? With a great lineup of sessions and speakers, this event is not to be missed. Whether you are looking to enhance your WM knowledge or simply looking to connect with others with WM, the Ed Forum has something for everyone.

Registering is easy. Just click here to access the registration form.

By attending the Ed Forum, you will have the chance to learn from leaders in the field, participate in engaging discussions, and expand your connections with the community. We look forward to seeing you in Washington.

And if you want to join us but can’t make it in person this year, a special announcement is coming next week... stay tuned!

- Education -

Educate and Empower Webinar

Thursday, February 29th at 1:00PM U.S. ET

Want Stronger Bones? Next month’s Educate and Empower webinar registration is open! 54 million Americans, half of all adults age 50 and older, have low bone density and are at risk of breaking a bone; that includes men. On top of it, some of the medications and treatments used to treat cancer may affect our bone health and increase the risk of osteoporosis and fractures. To stimulate bones to grow stronger, force must be applied – in the form of compression or tensile stress. Yoga is a safe and impact-free way of applying that force. Take control of your bone health by actively practicing tested yoga poses with consistency, proper alignment, and eagerness. No one is too old for yoga – and the earlier you start, the better it is for your bones!

Ann Grace MacMullan, E-RYT 500, C-IAYT, is a certified yoga therapist who specializes in tailoring the practice of yoga to a wide range of practitioners, and especially enjoys providing tools to support the aging process. She is qualified to teach Yoga for Osteoporosis through Dr. Loren Fishman and was featured in the New York Times article You’re Never Too Old for Yoga.

Registration Open!

Lymphoma Research Foundation Workshop

Virtual National Lymphoma Workshop:

Understanding Lymphoma Basics and Current Treatment Options

DATE: Saturday, March 16, 2024

TIME: 9:30 AM ET – 1:30 PM ET

The Lymphoma Research Foundation’s Lymphoma Workshop provides the latest information about lymphoma, current treatment options, and support issues to members of the lymphoma community across the United States.

There will be a WM breakout session with Dr. Prashant Kapoor of Mayo Clinic, Rochester, MN.

This Sunday- Yoga Nidra

YOGA NIDRA - SUNDAY FEB 11th at 4pm EST

“This was my first time and I very much enjoyed it - I couldn’t believe that 30 minutes went by so fast! I feel relaxed, calm, and I certainly will join again.” -Donna, after our January practice. Yoga Nidra has been shown to decrease stress levels, improve sleep quality, elevate well-being, and increase the mindfulness of the participants. Practice this guided relaxation while lying down on a bed or on a couch. Reach out to [email protected] to receive our Zoom invitation and follow-up recordings.

Recording Available! T’ai Chi & Qi Gong

New monthly class recording! Join Rami Rones to safely explore the ancient mind-body therapies of T’ai Chi and Qi Gong. The meditative state achieved during practice can reduce anxiety and stress while boosting your mood, immune system, and energy levels. Reach out to Ann Grace if you’d like to be a part of next month's powerful mind-body practice: [email protected].

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