The Waldenstrom's Weekly

July 26, 2024

Volume 4, Issue 29

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 -

IWMF Issues New Request for Proposals

to Global WM Researchers

On July 17th,The latest Request for Proposals (RFP) was sent to nearly 300 WM researchers around the world. The RFP is a result of the ongoing collaborative endeavor between the IWMF and LLS that began in 2015 with the development of the IWMF-LLS Strategic Research Roadmap Initiative. The initiative identified focus areas for future research efforts in order to accelerate our search for a cure for WM. A Request for Proposals has been issued each year since 2015 to attract and fund new global projects.

RFP applications are due by February 26, 2025, with scientific review of applications to be completed in March-April 2025. Announcement of the next awards will be in May-June 2025, and funding for approved proposals is anticipated to begin July 1, 2025 to February 26, 2026.

See IWMF’s Research Strategy (on the IWMF website) for more details about the Roadmap Initiative and the resulting RFPs. If you want information about how you can support the RFP and enable us to fund more research in our quest for a cure, contact Newton Guerin at nguerin@iwmf.com.

Patient Advocacy at New BeiGene Facility

Earlier this week, Newton Guerin, IWMF President & CEO, joined leaders of patient advocacy organizations throughout the U.S. to celebrate the grand opening of BeiGene’s flagship U.S. Biologics Manufacturing and Clinical R&D facility in Hopewell, NJ. The opening is the culmination of a three-year, $800 million project to expand BeiGene’s integrated manufacturing and R&D footprint in the United States. Newton Guerin is pictured above with Jen Branstetter, Executive Director, North America Corporate Affairs, BeiGene, during a tour of this new facility.

The day’s schedule also offered a Patient Advocacy Organization Breakfast where advocacy partners came together to talk through challenges around accessibility and affordability of medical care along with strategies to address increasing awareness, enrollment, and participation in clinical trials.

All of us with IWMF greatly appreciate our partnership with BeiGene as they continue to engage with advocacy partners to support access to care, innovative treatments, and support for people with cancer and their care partners.

IWMF Announces an Addition to the WM Physicians Directory in the U.S.

For your convenience in seeking a consultation for a second opinion, we provide a directory of well-known cancer centers we work with and physicians/researchers who are very knowledgeable about WM. All the physicians included in our Physicians Directory have agreed to be included in the directory for consultations.

Peter Forsberg, MD, is a fellowship-trained, board-certified hematologist/oncologist who has taken a clinical and research focus on the treatment of plasma cell disorders including multiple myeloma, amyloidosis, and less common conditions such as Waldenstrom's macroglobulinemia. Known for providing high quality, cutting-edge care, Dr. Forsberg is regarded not only as an expert in the field, but also as an expert in building relationships with his patients through empathy, compassion, and open communication.

New Partnership with Rare Revolution Magazine!

About RARE Revolution Magazine



RARE Revolution Magazine is an independent not-for-profit publication dedicated to elevating the voice of the rare disease community through its magazine, online presence, and social media. It produces high-quality articles to support disease awareness and education across stakeholders, sectors, and geographies. Featuring compelling voices and leading emerging conversations, RARE Revolution Magazine plays its part in turning the tide for rare diseases.

IWMF is thrilled to use RARE's platforms to share awareness about WM and upcoming IWMF events. On April 15, 2025, IWMF will take over RARE's social media accounts to spread awareness about WM on WM World Awareness Day! Stay tuned, and to subscribe to Rare Revolution Magazine, visit https://bit.ly/JoinTheRARERevolution.

Updated European WM Patient Forum Agenda!

We are pleased to share the agenda for the upcoming European WM Patient Forum that will take place on September 21st at Plaisterer’s Hall in London, UK. This event promises to be an invaluable opportunity for patients, caregivers, and healthcare professionals to share knowledge, experiences, and advancements related to Waldenstrom’s macroglobulinemia (WM).

- Education-

LLS Bloodline Podcast Featuring IWMF Ed Forum

A new Bloodline podcast episode from the Leukemia & Lymphoma Society (LLS), features interviews with expert speakers from IWMF's 2024 IWMF Educational Forum last May in Renton, WA. Elissa from LLS met with them to discuss how integrative oncology, wellness, mental health, and peripheral neuropathy affects WM patients and their caregivers.

CancerCare Connect® Education Workshop 

Caregiving for a Loved One with Cancer

September 23rd, from 1:30-2:30PM ET 

Topics Covered

• Definition of a Caregiver
• What Research Tells Us About Caregivers’ Well Being
• Caregiving for an Older Adult
• Caregiving for a Younger Adult
• Caregiving for a Friend
• Caregivers for Cancer Survivors
• Couples, Partners, Siblings & Friends
• Family, Partner & Friend Communication
• Care Coordination: Challenges & Tips
• Stresses on Family, Partners & Loved Ones
• Coping with Holidays, Birthdays & Special Occasions
• Managing Family, Friends, Partners & Traditions
• The Important Role of Long-Distance Caregivers
• Practical Tips for Managing Caregivers’ Stress
• Strategies for Self-Care
• Guidelines to Prepare for Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of Open Notes
• Questions for Our Panel of Experts

NEW Offering! 30-Minute Mindfulness Meditation

July 30th at 12:00PM ET

It's time to take a break for yourself. This Zoom class includes an introduction to mindfulness, and both guided and self-led periods of meditation.

• Did you know? A 2019 analysis of 29 studies (3,274 total participants) of mindfulness-based practices showed that use of mindfulness practices among people with cancer significantly reduced psychological distress, fatigue, sleep disturbance, pain, and symptoms of anxiety and depression. (Resource link)

Reach out to Ann Grace anngrace@iwmf.com if you’re interested in joining us. Can't make the live class? Subscribe to the IWMF YouTube Channel for the recording.

IWMF LIFELINE Peer Support Directory

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 their 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) that they support, and they may be able to assist you in accessing better information or refer you to experts in specific areas.

Check out the LIFELINE directory HERE.

Do you have experience with CXCR4 Gene Mutation, W&W, Plasmapheresis, CAR-T, or another important topic related to WM and are willing to share it with other WM community members? Pay it forward and join our incredible volunteers! Contact Shelly at mpostek@iwmf.com to relay your interest.

Cardio Flow for Peripheral Neuropathy

July 26th at 2:00PM ET

Exercise physiologists recommend a combination of strength, balance, and aerobic exercises for those experiencing peripheral neuropathy. Support your PN symptoms with exercises you can do on a regular basis. Reach out to Ann for more info at anngrace@iwmf.com.

Can't make the live class? Check the Fitness for WM YouTube playlist for the recording shortly after class concludes.

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 tomorrow 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

August Wellness Calendar Announcement

WM Community Corner

Beth from Indiana (US) is sporting her new IWMF swag! She purchased the journal, crossbody bag, and water bottle. Check them out and get yours at the button below!

IWMF Community Members Meet in Rhode Island

Howie (left), Marie, Anne, and Anne Marie (right) had lunch together on July 17th at Chelo's in Rhode Island. Thanks to Anne-Marie for setting up this get-together! Would you like to coordinate a gathering or local support group? Contact Shelly at mpostek@iwmf.com.

Anne Marie is hosting a WM music performance benefit, Chopin to Chicago, on September 15th at the Music Mansion in Rhode Island. Funds raised for the program will go toward IWMF financial assistance programs for WM patients. She will be accompanied by the Providence Drum Troupe, a famous street band with whom she performs regularly. In-person tickets for local community members are here, and, if you cannot attend but would like to donate to the cause, you can still support WM community members here.

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