This Week at the IWMF

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The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. The IWMF provides access to The Waldenstrom’s Weekly as a free service to WM community members to share WM related news and events. For more information, please contact info@IWMF.com

March 29, 2024

Volume 4, Issue 13

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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From the IWMF Newsroom

CHECK OUT THE IWMF NEWSROOM HERE!

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IWMF Vice-Chair of Information & Support Featured in LLS Video

Have you ever wondered: How can I live full of hope in the shadow of an incurable disease?

So does Lisa Wise, IWMF Vice-Chair of Information & Support! That was the question she submitted to the Beyond Your Diagnosis Q&A series by The Leukemia & Lymphoma Society (LLS).

First-Ever WM World Awareness Day on April 17th!

On Wednesday, April 17, 2024, we will campaign alongside our global partners and community to raise awareness, raise funds, and be counted as part the Waldenstrom’s Macroglobulinemia (WM) global community.

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IWMF ED Forum

The Ed Forum is Five Weeks Away!

Only five weeks away! Before you know it, the Ed Forum will be here. Don’t forget to register. You can join us in person or online. If you are attending in person, remember to book your hotel room at the Hyatt. Our special group rate ends on April 9th!

REGISTER HERE FOR IN-PERSON

VIRTUAL REGISTRATION HERE

RESEARCH

US FDA Authorizes Pemgarda for Pre-Exposure Prophylaxis of COVID-19 in Immunocompromised Individuals

On March 22nd, the US Food and Drug Administration (FDA) announced Emergency Use Authorization for Pemgarda (pemivibart) for pre-exposure prophylaxis of COVID-19 in certain immunocompromised patients. Pemgarda is a monoclonal antibody treatment that targets the spike protein on the current omicron variants of the COVID-19 virus.

Details regarding the announcement:

Read the full informational document HERE.

The GPS Survey Closes in a Few Weeks!
Please Help Represent the WM Global Community

The Lymphoma Coalition is wrapping up the eighth week of the 2024 Global Patient Survey on Lymphomas & CLL, and WM respondents are at 953 responses so far!

With only a few more weeks to go, we want to keep up the momentum and encourage everyone to continue working together to promote the survey! All responses from WM patients and caregivers are voices we need to hear.

The survey will remain open for two more weeks and will close on Friday, April 12th.

Let’s keep pushing, sharing, and advocating so more WM perspectives can be collected up until April 12th!

Complete the survey HERE and be counted!

EDUCATION

Familial WM Research from the Frontlines

IWMF Global Educational Webinar
Monday, April 15, 2024, at 1:00PM EDT

Join us on April 15th for a one-hour presentation and Q&A session, which will cover information and updates about familial research being conducted at Mayo Clinic, Rochester, MN.

Susan L. Slager, Ph.D., investigates the inherited genetic basis of lymphoma, including chronic lymphocytic leukemia, non-Hodgkin’s lymphoma, multiple myeloma, and Hodgkin’s lymphoma. Dr. Slager leads the Mayo Clinic B-cell lymphoma family registry, in which more than 500 families (including relatives) have consented to participate. These families are followed over time to better understand why relatives from these families have a higher risk of lymphoma (regardless of lymphoma subtype) than the general population.

REGISTER AND LEARN MORE

Speaker

Dr. Susan Slager
Mayo Clinic

SUPPORT

The 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 WM patients and 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 to refer you to experts in specific areas.

Check out the LIFELINE directory HERE.

Are you interested in being a LIFELINE volunteer? Contact office@iwmf.com.

Laughter Yoga on April 1st at 2:00PM EDT

Laughter is the best medicine! In honor of April Fool’s day, we’re excited to invite a special guest and WM friend Barbara Lovejoy to share her gift of spreading joy with us. Barbara is a Certified Laughter Yoga Leader and a retired Licensed Clinical Social Worker living in California. Come learn about the therapeutic benefits of laughter and practice getting your giggles on! Both seated and standing options available, all levels welcome. 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 at anngrace@iwmf.com.

Next Tuesday at 2:00PM ET: T’ai Chi and Qi Gong

Join Rami Rones on Tuesday, April 2nd, 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. Reach out to Ann Grace if you’d like the Zoom invitation or recording atanngrace@iwmf.com

WM People of Color Support Group

Friday, April 5th at 1:00PM EDT

The WM People of Color Support Group will be having their next meeting on Friday, April 5th at 1:00PM eastern time. The group will be joined by Patricia Watkins, a licensed clinical social worker, to present on the topic of mental health.

To join the mailing list, contact mpostek@iwmf.com.

Patient Access Network Foundation (PAN) WM Fund Open for U.S. Patients

The Patient Access Network (PAN) Foundation is helping U.S. patients afford their out-of-pocket costs with annual grants of $3,250.

We know it can be difficult to afford the out-of-pocket costs of treatment for WM. If you’re looking for more financial assistance resources to help with your out-of-pocket treatment costs, we encourage you to learn more about our friends at the PAN Foundation.

The Patient Access Network (PAN) Foundation is a national organization that helps underinsured patients with life-threatening, chronic, and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs.

Review the full eligibility criteria HERE to see if you qualify.

How to apply

It’s easy to apply, and you’ll learn if you’re approved for a grant immediately. Visit PAN’s online patient portal to get started or reach PAN by phone at 1-866-316-7263, Monday through Friday, 9AM-7PM Eastern Time.

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Waldenstrom’s Weekly – March 29, 2024