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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.

“Thanks to the amazing progress being made on treatments for WM, the support of IWMF, and the encouragement of many others with WM, the future is looking much brighter.”

-Tom G., Minneapolis, MN

IWMF Support Group Leader

Please note that the IWMF home office will be closed on November 28th and 29th in celebration of the Thanksgiving holiday.

- Special Announcements -

Story of Hope Update

Lisa Weldy: Resilient and Grateful

"I am no longer terrified and feel that as the years have passed, I am more confident about how to exist in the world as a person with WM."

Read Lisa's Story Here

WM-VOICE Study Open Through January 2025

Have you shared your WM-VOICE yet? Calling all community members with WM in the US, UK, Australia, Canada, and the Netherlands! Your voice matters! Participate anonymously in the WM–VOICE study to share what YOU value the most regarding treatment options. In just 30 minutes, you can shape the future of treatment. Watch the video below, from IWWM-12, to learn more about this research from Dr. Anne-Marie Becking, one of the study investigators.

Dr. Anne-Marie Becking and Dr. Wouter Verhaar

So far there have been 655 surveys completed! THANK you to ALL who have completed this important survey. Let's keep raising our voices to ensure more data is collected! Join us here:

Graph of participation in various countries - US 322, UK 103, Netherlands 75, Canada 103, Australia 53 (655 total)

WM Community Member Featured in Cure Calendar

The 2025 calendar from Cure Magazine is available, and if you turn to the month of April, you can see artwork by one of our community members!



From Carole: During a difficult period of my Waldenström’s cancer [Waldenström macroglobulinemia], I was taking a Zoom art class, and the instructor used an image of the Valkyrie women warriors. It helped inspire this painting and helped me navigate a tough time. My “Warrior Within” has been shared with others who find the image appealing and helpful.


You can download the calendar free or request a printed copy here. Congrats Carole!

- Education-

Webinar from Cancer and Careers

Self-Care: Practical Approaches

Wednesday, December 4, 2024

1:00 PM ET/10:00 AM PT

With all the doctors' appointments, treatment schedule and work, we often neglect to take time for ourselves. Self-care continues to be an important aspect of emotional and physical health, which translates into productivity and success in the workplace. This session will

  • help you prioritize self-care while managing a busy schedule; 
  • understand the benefits of self-care on a personal and professional level; and
  • provide suggestions for self-care both during and outside of the workplace.                           

Register here.

Replay Available from The Patient Story

Finding and Partnering with a Doctor for Better Waldenström Care

Finding a match with a doctor is important for your WM care. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Join Dr. Jonas Paludo from Mayo Clinic and WM patient advocate Lisa Ramirez as she discusses how her decisions led to being treated by Dr. Paludo, and how they formed a trusted patient-doctor relationship. Watch it here.

- Support -

T’ai Chi and Qi Gong - December 3rd at 2:00PM ET

Join Rami Rones to safely explore 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 the Zoom invitation before class, and for more information.

WM People of Color Support Group Meeting

December 6th at 1:00PM US ET

The WM People of Color Group will be having their next meeting for patients and caregivers in December. Attendees will join leaders Paula and Mike on Zoom with a guest speaker, Dr. David Bolon, a cardiologist at Manhattan Integrative Cardiovascular.

 

Friday, December 6th, 2024

1:00PM - 2:00PM U.S. ET

 

To join the mailing list for this group, contact office@iwmf.com

YOGA NIDRA - December 6th at 2:00PM ET

Yoga Nidra Dec 6th at 2pm ET

Relax and retreat with this delicious 30-minute guided meditation for WM friends and their loved ones. Yoga Nidra invites participants to hover in the liminal space between wake and sleep, nurturing the body while freeing the mind. This spoken word practice is set to the grounding tones of authentic Himalayan singing bowls, for further down-regulation of the nervous system.


Slow down and take exquisite care of yourself! Sign up here.

Watch & Wait Support Group on December 12th

IWMF will be hosting TWO Watch and Wait (W&W) Support Groups on Thursday, December 12th, at 2:00PM ET. The groups will be divided into W&W- Untreated and W&W-Treated. Two volunteer leaders will host each sharing session to support our community members who are navigating the watch and wait stage of WM and MGUS (monoclonal gammopathy of undetermined significance). The meetings will each last for one hour.


Registration:

Watch & Wait- Untreated
Watch & Wait- Treated

December 13, 2024

1:00PM US Eastern Time

IWMF is proud to announce a new support group for individuals diagnosed with WM who identify as LGBTQ+ and their partners and caregivers. Group leaders Gene and Jane recently shared their thoughts about the importance and purpose of this new support group: "Focusing on the experiences, fears, and triumphs LGBTQ+ folks face, often in isolation, this group provides a brave, safe, and unique space where members can be their authentic selves while coping with the challenges of living and thriving with WM through an LGBTQ+ lens. Our intention is to focus on the highs and lows of diagnoses, emotions, and treatments while we build a community of mutual support and trust. Finally, we will raise our voices for acceptance, allyship, and understanding of our shared LGBTQ+ identity with the greater IWMF community."

Register here for the meeting.


Meet our leaders!

Gene Batiste, Ed.D., is the Chief Catalyst for With Respect Consulting based in Washington, D.C. In this role, Dr. Batiste serves independent schools, college and universities, and artistic and nonprofit organizations by guiding Diversity, Equity, Inclusion, and Belonging (DEIB), leadership, and organizational vision to action through transformative engagement. As a chief catalyst, he engages with clients as an advisor, consultant, facilitator, leadership coach, presenter, qualitative researcher, and strategist. Dr. Batiste comes from a military family, having lived in Japan, Hawaii, Washington, D.C., and San Antonio, Texas. He and his husband, Scott Honeychurch, a nursing administrator at George Washington University Hospital, live in Washington, D.C. with Bravo, their Welsh Terrier.

Jane Loud, MSW, is a retired Licensed Clinical Social Worker who has worked with individuals and families experiencing crisis and complex trauma. She and her wife, Rayleen Stubbs, a former business owner in healthcare reimbursement, software, and consulting, moved from New England to Myrtle Beach, SC in 2017, shortly after Jane was diagnosed with WM. They enjoy a life of travel in their RV, hiking, kayaking, and keeping in touch with a wide circle of friends and family. 

In Case You Missed It: Wellness Webinar

The recording of our Measuring Quality of Life in WM and Other “Tired Topics” with Dr. Shirley D’Sa is now available! We had a record-breaking 272 folks register, and 117 attended live from all over the world. Dr. D’Sa is wholly passionate about listening to patients and understanding the experience of living with WM and how it should impact its treatment. Learn more about her most recent research, which uses wearable technology to measure the experience of living with WM.

Measuring QoL - Press Play!

Special thanks to Dr. Shirley D'Sa, who graciously joined us from her family vacation while in Stockholm, Sweden. 

December Wellness

GET THE IWMF WELLNESS NEWSLETTER - Are you interested in receiving a monthly newsletter featuring all the wellness news for the month ahead? Get the Zoom links to every class in one spot, meet featured members of the wellness community, and learn the latest on how integrative therapies can help you navigate your journey. One email per month only!  Sign me up.

Collage of IWMF Wellness Bulletin information

Patient Survey Opportunity

Help Shape the Future of Cancer Support Care

Your experience with WM matters. By sharing your insights, you can have a direct impact on the research that will transform support systems for cancer patients worldwide.


If you have been affected by WM, your unique perspective is invaluable. Every story and experience brings us closer to providing care that truly addresses the needs of patients and survivors.


Why Participate?

Your input will guide healthcare providers in creating support structures that genuinely meet patient needs, helping to close critical gaps in care and resources. Click here to make a difference.

Let's Work Together to Accelerate the Cure!

Accelerate the Cure is our $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: One for global research, one to accelerate clinical trials, and one that funds the next generation of researchers. A fourth fund ensures that IWMF continues to advance life-changing education and support programs while we push for that cure. Visit the Ways to Give page on our website to learn more about the Opportunity Funds and other ways to support this effort.

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

IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | info@iwmf.com | 1-941-927-4963
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