This Week at the IWMF

View The Waldenstom's Weekly Archive Page

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

April 5, 2024

Volume 4, Issue 14

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!

READ THE STORY

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).

Hello to the WM community worldwide!

I hope 2024 is going well for you. As for us, IWMF has been incredibly busy as usual, as we bring you useful information and support for your WM journey. This includes the IWMF Torch, and because the April issue is soon to hit the web and mailboxes, here is a quick peek at its focus.

The biggest meeting of the year for hematologists is the Annual Meeting of the American Society of Hematology (ASH), and this past year in December, the IWMF sent representatives from its Board and staff. As a result, the April Torch showcases some exciting WM research that was presented there and provides a look at the enormous scale of the presentations and events surrounding it. As most of us will never attend this meeting, here is our window into the amazing work that goes on behind the scenes to help everyone dealing with a blood cancer. And, that includes WM.

We hope you enjoy this first-person ASH meeting coverage, as well as stories from a variety of WM patients around the world: their hopes, their dreams, their activities, and the peace of mind they find in the companionship and education offered in IWMF support groups.

Here’s to good health for all of us!

Shirley Ganse

Editor, IWMF Torch

READ THE APRIL ISSUE

New Website Accessibility Tool!

In preparation for Global Accessibility Awareness Day in May, IWMF has published an accessible PDF of the April edition of the Torch and implemented some new tools to make our website more accessible. Next time you visit the IWMF website, look for the icon above, located left and center on every page of the website, to choose an accessibility profile that’s right for you. Email us at office@iwmf.com to let us know what you think!

IWMF ED Forum

Register TODAY for the IWMF Ed Forum in May!

The Ed Forum is an exciting opportunity to learn from the best and meet friends for life, while also slowing down for self-care. Take exquisite care of yourself with a morning meditation, a stretch break during our general session, or join one of our afternoon offerings such as Sound Meditation or Community Yoga (also available virtually). Discover the surrounding area during group community walks throughout the weekend. We’re excited to support your well-being so you can immerse, explore, and soar! Learn more on our website at iwmf.com, or reach out to Ann Grace at anngrace@iwmf.com.

The Ed Forum is four weeks away! There is still time to register for in-person or virtual attendance. 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

Next Week: TRIPLE Your Donation to IWMF

Triple your gift to IWMF from noon EDT on April 9th through noon EDT on the 10th! That’s right: gifts of $25 to $100 will be matched 2 to 1. For example, if you donate $100, IWMF will receive $100 from you, $100 from the Giving Challenge Sponsors, and $100 from IWMF matching gift funds – for a total of $300!

But wait, there’s more! Thanks to the generous support of Sponsors, gifts from $101 to $1,000 will be more than doubled! Example: If you donate $1,000, we will receive $1,000 from you, the Giving Challenge Sponsors will match $100, and our IWMF Sponsors will match your $1,000! Your gift of $1,000 will total $2,100 to IWMF. Be sure to participate for your chance to make the most of your gift!

Go to this website during the 24-hour giving challenge to maximize YOUR gift to IWMF! More information about the Giving Challenge can be found here. Thank you for helping to Accelerate the Cure!

Next Week: TRIPLE Your Donation to IWMF

Earlier last month we announced the date for our upcoming European WM Patient Forum to be held in London, UK in partnership with WMUK. That date has now been changed to September 21-22, 2024. More details coming soon, but in the meantime please mark your calendar.

April 6th is World Health Day

The theme for World Health Day 2024 is “My health, my right“.

This year’s theme was chosen by the World Health Organization (WHO) to champion the right of everyone, everywhere to have access to quality health services, education, and information, as well as safe drinking water, clean air, good nutrition, quality housing, decent working and environmental conditions, and freedom from discrimination.

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.

Join Us in Celebrating WM World Awareness Day

On April 17th we are recognizing the first-ever Waldenstrom’s World Awareness Day!

Let’s raise awareness of the impact of this disease, support those fighting the battle, and strive for a world free from WM.

Download your activity pack HERE and find out how to get involved!

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

New Wellness Offering! Gentle Mat Yoga

FRIDAY, APRIL 12th at 11:00AM ET

Roll out your mat to improve your flexibility, mobility, strength, balance, and bone density! Manage your stress and support your immune system health while addressing symptoms like fatigue and peripheral neuropathy. This gentle 60-minute, all-levels mat class will move at a gentle pace, with mindful transitions up and down to the floor. Expect to use a range of yogic tools such as breathing exercises, meditation, and yoga postures. We will leave time for a rest pose at the very end. No yoga experience necessary. Optional: 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 anngrace@iwmf.com.

LLS Nutrition Education Services Center

Throughout a WM diagnosis, there’s a lot to keep track of—including the food you eat. It can be tough to get enough nutrition, let alone the right kind. That’s why The Leukemia & Lymphoma Society (LLS) offers support from registered dietitians like Margaret Martin RD, MS, LDN, CDCES.

The LLS team of dietitians, including Margaret, help blood cancer patients and their caregivers make nutrition choices to support the body—during treatment and beyond.