The Waldenstrom's Weekly

January 19, 2024

Volume 4, Issue 3

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 & NORD Financial Assistance Program:

2024 EXPANSION!

The IWMF is proud to announce an EXPANSION to our financial assistance program in partnership with The National Organization for Rare Disorders (NORD)!



The IWMF Travel & Lodging (T&L) Assistance Program has been providing individuals diagnosed with WM, or those being evaluated for the disease, with financial assistance related to second opinion or diagnosis confirmation appointments. With WM being a rare disease, having a second opinion with a WM specialist can be critical to confirm diagnosis and course of treatment.

The T&L Program also offers financial assistance for travel related to clinical trial eligibility screening or first clinical trial visit (not being paid for by trial sponsor) up to the program's established financial limit.

NEW in 2024! To reach more WM community members and further our mission of achieving better patient outcomes, we are now expanding our program with an annual grant for travel to regularly scheduled WM-related appointments!

Community members inside AND outside of the U.S. may qualify. Apply today!

CLICK HERE for the REVISED NORD flyer 

For further information or to apply for this program, contact NORD Monday-Friday between 8:30AM - 6:00PM EDT:

203-308-5902 or [email protected]

Please note that funding is limited. If you would like to contribute to the IWMF and our T&L Fund, please contact Annette Preston, IWMF Director of Donor Engagement, at [email protected].

This is a special opportunity to help other WM patients!

IWMF Seeking Fundraising Volunteers

The IWMF is currently seeking individuals with experience/expertise in non-profit fundraising.

Do you have professional fundraising experience or significant experience as a volunteer in fundraising? Or do you know anyone with that professional background? Ideally, we are looking for a WM patient, caregiver or friend of a WM patient. Please forward all suggestions to Newton Guerin (IWMF CEO) at [email protected] and copy Carl Harrington (IWMF Vice Chair, Fundraising) at [email protected].

Thank you for your support of the IWMF!

- IWMF Ed Forum & Cruise -

We are excited about our upcoming 2024 Educational Forum! As we prepare for this conference, we wanted to share some exciting activities that will be available before, during, and after the conference.

Guided Hike of the Cascades - May 2 JUST ADDED

Get ready to explore the breathtaking beauty of the Cascades with our guided hike. Immerse yourself in nature and enjoy the stunning views that await you. Join our volunteer guides for a peaceful and reenergizing escape. Click here for hike details.

Ed Forum Alaska Cruise - May 6-13

Following the Educational Forum, we invite you to join us on an unforgettable Alaskan adventure. Cruise through the picturesque Alaskan fjords with their majestic glaciers and abundant wildlife. This is an opportunity to unwind, network, and create lasting memories with members of the IWMF community. Reserve your balcony room here. We encourage you to reserve soon; the deadline for this exclusive rate is January 31, 2024.

Discover Renton & Seattle - Educational Forum Recreation Guide

Extend your stay in the beautiful Pacific Northwest and use our comprehensive Ed Forum Recreation Guide. Discover the vibrant city of Seattle, visit iconic landmarks like the Space Needle, explore the unique neighborhoods, and sample local cuisines. Additionally, Renton offers its own charm, with stunning parks, museums, and recreational activities to enjoy. The Educational Forum Planning Committee has created a quick Recreation Guide just for you!

We believe these activities will enhance your overall experience at the 2024 Educational Forum, providing opportunities to relax, explore, and network. Whether you embark on the guided hike, join us on the Alaskan cruise, or explore the wonders of Renton and Seattle, we are confident that you will have a memorable experience.

Please feel free to reach out to us if you have any questions or need further information. We can't wait to see you at the 2024 Educational Forum!

- Story of Hope Update -

 Ryan Scofield's Update:

Young WMers Shared Challenges

"Life continues for me, with WM being low on my list of daily concerns."

- Education -

IWMF Wellness Educate & Empower Series 

Do you experience pins and needles, pain, numbness, or weakness in your feet, legs, or hands because of peripheral neuropathy? Join exercise physiologist Nancy Campbell to learn how simple exercises can help manage the challenges of peripheral neuropathy (PN). We will discuss different treatment strategies, such as improving blood flow and movement, and learn how to incorporate these into our daily lives. Come ready to learn and do – wear comfortable clothing that you can move in and bring water to stay hydrated. Register now to join our Zoom Educate and Empower monthly wellness webinar!

TODAY! WM Sound Meditation at 2:00PM ET

“My dog was next to me throughout the whole practice, and he is so relaxed now so that shows it works on all sorts of creatures.”  Relax to the sound of authentic Himalayan Singing bowls, with gentle verbal guidance and healing chants to further calm the nervous system. This practice can be done from bed, and pets are welcome! Email Ann Grace ([email protected]) to receive the Zoom link and follow-up recording. 

Medication Co-Pay Financial Assistance:

One Program Open for US Patients

There is currently one open medication co-pay program for WM Patients in the United States. Don't miss the opportunity for assistance as this program will likely close quickly, and we never know if and when it will reopen.

The Patient Access Network (PAN) Foundation offers $3,250 for eligible WM community members.

DON'T WAIT- APPLY TODAY!

Young WM Support Group Meeting

TOMORROW, January 20th at 12:00PM 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 Ryan, Deborah and Jason on Zoom for a caring and sharing session, which will last approximately one hour.

Saturday, January 20th

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

To join the mailing list for this group, contact Michelle:  [email protected]

NEW CLASS! T’ai Chi & Qi Gong 

Tuesday, February 6th at 2:00PM EST

Get on the mailing list now for this exciting new offering! Join Rami Rones to safely explore the ancient mind-body therapies of T’ai Chi and Qi Gong. The meditative state achieved during practice can help reduce anxiety and stress while boosting your mood, immune system, and energy levels. 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 to be a part of this powerful mind-body practice: [email protected].

NEW Specialty Topic Support Group in March!

Watch & Wait/MGUS

Save the Date: March 3, 2024

We invite you to mark your calendars for the inaugural meeting of the new IWMF Specialty Support Group, designed especially for those navigating the "watch and wait" stage of WM (Waldenström's macroglobulinemia) and MGUS (monoclonal gammopathy of undetermined significance). Whether you've been living with asymptomatic conditions for years or have recently received a diagnosis, this gathering presents a unique opportunity to connect with individuals who, like you, are seeking support and guidance on "what comes next" and how to effectively manage this new chapter in your life.

Jeanne Hartig, hailing from Pittsburgh, PA, first encountered the term "watch and wait" when she was diagnosed with WM in May of 2023. "I've come to realize,” she said, “that for those of us who are asymptomatic, the phrase 'watch and wait' often translates to 'watch, wait, and worry.' I am constantly wondering if the next scan, bloodwork result, or new symptom will signal that my condition has changed—and what that means as I look to the future.”

Recognizing the need for a support network during this challenging phase, Jeanne reached out to Marcia Klepac, a leader of the East Ohio, Western PA, and West Virginia IWMF Support Group, alongside Shari Hall. Marcia then connected Jeanne with Michelle Postek, IWMF Manager of Information and Support, and Lisa Wise, IWWF Vice-Chair of Information and Support. The unwavering enthusiasm and support of these four volunteers gave rise to the creation of a specialized support group tailored to individuals diagnosed with WM or MGUS who are asymptomatic and not currently undergoing treatment.

We are therefore excited to announce that our very first virtual meeting of this new support group will take place via Zoom on Sunday, March 3, 2024, from 2:00 PM to 3:30 PM ET. (Details on how to sign up for this event will be provided shortly.)

"If you find yourself in the early stages of this challenging journey, much like I am," Jeanne shares, "I invite you to join me. This is our opportunity to lean on one another for support, and I eagerly anticipate meeting you and hearing your unique stories."

Save the date and stay tuned for more information on how to participate in this essential gathering. Together, we can navigate the uncertainties of the "watch and wait" stage of WM and MGUS with strength and mutual support.

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