The Waldenstrom's Weekly

February 16, 2024

Volume 4, Issue 7

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.

- Story of Hope Update -

From Iceland - Gunnar Ármannsson:

The Adventure Continues

“I am a marathoner, I must run.”

- Research -

Research Study at National Institutes of Health:

Natural History of WM Study

The National Institutes of Health (NIH) is interested in recruiting new WM patients for their Natural History Study of WM. A Natural History study is a longitudinal study looking at the course of the disease from initial diagnosis to progression and treatment, and relapsing after treatment. This is an observational study that doesn’t provide treatment and follows patients in conjunction with their local hematology/oncology provider.

The purpose of the Natural History study is to collect research samples to investigate the molecular basis and clinical development of WM (and other B-cell lymphomas) to better understand the pathogenesis which can lead to discovery, or to validate new, therapeutic agents.

Patients must travel to NIH for appointments. There is flexibility in how often patients have to come, so they can tailor the study to each participant's needs/situation. Travel reimbursements may be available to patients who live more than 30 miles from NIH. The consent form is available for your review HERE.

For further information or to enroll, contact Rachel Adams, Research Nurse Specialist, at 301-412-3920 or [email protected].

- IWMF Ed Forum -

The countdown has begun; we are less than three months from the Ed Forum kickoff! 

With a packed agenda featuring WM experts from around the world, this conference promises to be a valuable opportunity for learning and networking. Whether you are recently diagnosed or have been living with WM for a while, or if you are a caregiver, this forum offers a wealth of knowledge and connections to enhance your understanding and expand your community.

Register now for the in-person experience by visiting our official website HERE. 

In addition to this year's in-person experience, we are excited to announce a virtual opportunity as well. No matter where you are located, you can participate and benefit from the event. Use this link to register for the virtual experience.

If you have any questions or need further assistance, please feel free to reach out to our dedicated team. We look forward to welcoming you to the 2024 Educational Forum and creating an enriching experience for all participants.

- Education -

Webinar from the University of Rochester:

Chemo brain- It's a thing

A Community Conversation on Cancer

Thursday, February 22nd

12:00PM - 1:00PM U.S. ET

Cancer effects are more than physical. Join Dr. Michele Janelsins and Beverly Canin to learn about the cognitive changes that can happen to those with cancer, the biological reasons for the change, and some interventions that may help. Have your questions answered in a facilitated Q & A session.

Educate and Empower Webinar

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

Dem Bones: Have you signed up yet? Find out which yoga poses have been proven to strengthen bone, while learning about the science behind improving bone quality. Take control of your bone health by practicing researched yoga poses with consistency, proper alignment, and eagerness. Total beginners welcome; participants will be guided through versions of poses according to their abilities and what is safe. 

Bio: 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 certified 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.

Register in advance for this meeting below!

TODAY- Sound Meditation for WM

SOUND MEDITATION - FRIDAY FEB 16th at 2:00PM U.S. ET 

“I absolutely loved the sound meditation, and I found myself totally immersed in the beautiful and relaxing sounds surrounding me. I have played the recording a few times since already.” – Amy, after our January practice. 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 [email protected] 

to receive our Zoom invite and follow-up recordings.

Chair Yoga - New Time Available!

Attention UK and European friends! We are offering another Chair Yoga class at a new time in hopes that you will attend! WEDNESDAY, FEB 21st 9:00AM EST/2:00PM GMT

Yoga is an ancient mind-body practice that has been increasingly studied as an intervention to improve the quality of life for those affected by chronic illnesses like cancer. Try this gentle, inclusive yoga practice to stay balanced in mind, body, and spirit. Both seated and standing options are available, and all levels are welcome. Stick around to connect with the WM wellness community after class. Reach out to Ann Grace if you’d like the Zoom invitation or recording at [email protected].

Recording Available! Yoga Nidra

“I’ve used the Yoga Nidra recording 4 times in 2 days and have enjoyed more deep breathing in this period than I’ve had over many months! The impact of your very calm voice and guidance have been truly amazing.” - Lu K.

IWMF Support Groups, International Affiliates,

& LIFELINE Peer Mentor Volunteers

One of the very best parts of the IWMF is our community members and the support they share. Support Group meetings, whether in the US or those of our International Affiliates, provide a more frequent opportunity for members to meet, share information, compare experiences, and provide mutual encouragement. Most of our support group meetings are held virtually over Zoom, so you can participate from anywhere in the world! Check out our website calendar HERE for up-to-date meeting details.

If you have questions on specific topics and you would like to speak with someone who is an experienced WM patient or caregiver who may have had a similar experience, our  LIFELINE 1:1 Peer Mentor volunteers may be able to help!

If you are interested in volunteering as a support group leader or peer mentor, contact Michelle at [email protected].

Partner Spotlight: Cure Media Group

Launched in 2002 for patients with cancer, survivors, and their caregivers, CURE® Media Group’s flagship magazine and online resource curetoday.com provide access to leading resources and information that serve as a guide to every stage of the cancer experience.

Published quarterly, CURE magazine is a helpful resource for insights, stories, and updates about cancer treatment and survivorship. CURE is FREE to patients with cancer, survivors, or caregivers who live in the U.S. Subscribe here

Global Patient Survey on Lymphomas & CLL

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