The Waldenstrom's Weekly

June 16, 2023

Volume 3, Issue 21

IWMF is dedicated to supporting and educating everyone affected by WM to improve patient outcomes while advancing the search for a cure.

-Special Announcements -

The IWMF is proud to share a new publication today! The Young Patients with Waldenstrom’s Macroglobulinemia Fact Sheet was written by Dr. Jonas Paludo (Mayo Clinic) in collaboration with the IWMF International Young WM Support Group. The fact sheet is currently being translated into eleven languages, and the translations will be available here at the website next week. Thanks to all involved for their help creating this important publication!

The IWMF Welcomes Two New Team Members

The IWMF is delighted to introduce two new international team members! Beth Mitchell and Hannah Syed are both based in the United Kingdom, and share the role of IWMF Managers, Affiliate & Global Partner Engagement. Their primary roles are to:

• Offer hands-on support to serve and strengthen the efforts of IWMF International Affiliates throughout Europe and beyond.
• Work in full partnership with each Affiliate Leader(s) to determine priority areas of need and identify additional available resources.
• Create support plans with each Affiliate and oversee implementation.
• Build relationships with global external partners that result in positive outcomes for the global WM patient community.

Please join us in welcoming our new team members!

-Education -

Triage Cancer Podcast Available:

Dealing with Medical Bills

Managing medical bills after a cancer diagnosis can be stressful and even confusing. But there are some key things to understand that can ease the burden and save you money in the long run! Listen to the podcast here.

Join the IWMF Online Community!

IWMF CONNECT and Facebook Groups

The IWMF offers two Internet-based group discussion forums where you can communicate with others, share experiences and insights, exchange information, and get emotional support. The discussions typically focus on WM diagnosis, treatments, research, prognosis, side effects and related conditions. Thousands of patients and supporters from all over the world are signed up, come join us by clicking the links below!

• IWMF CONNECT
• IWMF Facebook Group

A BIG thanks to Julianne Flora-Tostado (IWMF Support Group Leader) and Meg Mangin (IWMF Board Trustee) for their roles as moderators of these important resource groups, as well as other volunteers who provide support to community members!

For help navigating IWMF CONNECT or Facebook, contact [email protected].

IWMF Second Opinion Financial Assistance Program in Partnership with NORD

The IWMF is currently offering our first financial assistance program in partnership with The National Organization for Rare Disorders (NORD).



The IWMF Travel & Lodging (T&L) Assistance Program provides individuals diagnosed with WM, or those being evaluated for the disease, with financial assistance related to second opinion or diagnosis confirmation appointments up to the program's established financial limit. With WM being a rare disease, having a second opinion with a WM specialist can be critical to confirm diagnosis and course of treatment. Community members inside AND outside of the U.S. may qualify.

CLICK HERE for the NORD flyer!

For further information or to apply for this new program, contact NORD M-F between 8:30am - 6:00PM EDT:

203.308.5902

[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!

WM Community Corner

Last weekend, Hannah Syed (IWMF Manager, Affiliate & Global Partner Engagement) attended the Waldenström France Patient-Doctor Meeting in Paris, France.

Last week, Newton Guerin (IWMF President & CEO) and Beth Mitchell (IWMF Manager, Affiliate & Global Partner Engagement) attended the European Hematology Association (EHA) Meeting in Frankfurt, Germany.

From Cancer Support Community (CSC):

A Sweet and Soothing Summer Treat

From CSC:

As the weather warms up, cool off with a nutritious and soothing popsicle. This cranberry coconut popsicle provides fiber and healthy fat while also being a perfect dessert for patients experiencing dry mouth, mouth sores, or difficulty swallowing. Enjoy this easy-to-make treat all summer long! Check their recipe out here!

The IWMF website calendar is updated regularly with upcoming IWMF Support & Specialty Topic Groups, International Affiliate Meetings, and IWMF Partner Meetings. Check out what's on the horizon HERE!

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