The Waldenstrom's Weekly

May 17, 2024

Volume 4, Issue 19

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 -

2024 Ed Forum Video Recordings Now Available!

We are excited to announce that the session recordings from the 2024 IWMF Ed Forum are being uploaded to the IWMF website as we speak! Catch up on all the insightful presentations and discussions from this year's event by visiting the Ed Forum video channel of our Video & Presentation Library. Watch and share with your network!

Venue Confirmed for the WM European Forum!

We are delighted to announce the upcoming European WM Patient Forum will be held at the Royal Society of Medicine in London, UK, on September 21-22. Keep an eye out for registration details in the coming weeks!

May 20th is Clinical Trials Day

Organized and promoted by Association of Clinical Research Professionals (ACRP) since 2014, Clinical Trials Day arrives each May 20th as an opportunity to pause in reflection, recognition, and admiration of all that has been accomplished thanks to clinical trials and the people behind them.

People take part in clinical trials for many reasons. When you volunteer to participate in a clinical trial, you help researchers learn more about curing, preventing, and treating WM and its complications. Your contribution to medical research has the potential to help improve the quality of life for people with WM.

We recently committed $2.5 million to support WM-NET, a new multi-institutional network for clinical and research programs dedicated to WM. This commitment is IWMF’s largest single research grant. Led by Dana-Farber Cancer Institute (DFCI), this groundbreaking effort brings together 17 major cancer centers and affiliates across the country to share knowledge and develop clinical trial protocols with the goal of providing patients with more treatment options.

If you would like to support this effort with your donation, please visit our donation page.

If you have participated in a clinical trial for WM, THANK YOU for being a trailblazer among us!

May is Mental Health Month

Being able to maintain good mental health is essential to each and every individual’s overall health and well-being.

Navigating uncertainty and fear about what is happening in the world and what the future holds can feel overwhelming, but no one has to suffer in silence. There is hope.

With the IWMF, you are not alone. We offer resources, such as IWMF Support Groups, IWMF Wellness Program, IWMF LIFELINE, IWMF CONNECT and IWMF Facebook to connect with other WM community members and get support.

A coping toolbox is a collection of skills, techniques, items, and other suggestions that you can turn to as soon as you start to feel anxious or distressed. Looking for ideas for your coping toolbox? Check out this helpful fact sheet HERE to help you get started.

- Research -

Make a Difference with WhiMSICAL

The WM Study In CARTWHEEL: WhiMSICAL registry investigators are seeking help from all WM patients globally to contribute their own data for an abstract for the major hematology conference, the American Society of Hematology meeting. They plan to analyze the updated data in June.

Patients’ self-entered data is making a difference and advancing knowledge. The more data, the bigger the impact! Read our publication here.

If you are one of the 650 patients whose lived experience is already included in WhiMSICAL, please update your treatment, Hb & IgM, and QoL data HERE.  Even just one entry will provide an important activity update, so we urge those who have not visited WhiMSICAL for a while to sign in. 

To new participants, please add your voice to the WhiMSICAL registry by joining CART-Wheel.org HERE.

To have your anonymous data included, please enter your data by June 1st.

For Frequently Asked Questions, click HERE. For assistance, email whimsical@iwmf.com.

Together, we can find answers to important questions in WM research as we search for a cure.

- Education -

Educate and Empower Webinar on May 30th:

Eating Well to Live Well with WM

IWMF is committed to providing resources to support your health and manage common symptoms of WM, such as fatigue. On May 30th, Chef and Integrative Oncology Nurse Navigator Laura Pole will go beyond basic nutrition by exploring the principles of health-supportive food selection that emphasize nourishment on a holistic level. 

In this webinar, we'll tackle some of the practical aspects of translating a dietary prescription to a plate of delicious healthy food, and Chef Laura will also share a quick and easy recipe! Create a shift in your perspective from “watchful waiting” to “active surveillance;” where self-care practices such as eating well can contribute meaningfully to living well with a chronic illness.

Laura Pole is the Director of Nourishment Education Programs at Smith Center for Healing and the Arts, as well as the head chef for their cancer retreats. Her popular cooking classes are centered on helping participants translate a diet prescription to a plate of nourishing delicious food. She has created and coordinated trainings for professionals and patients in culinary translation, cooking for people with serious illness and integrative oncology navigation. She is also the Senior Clinical Consultant for the CancerChoices integrative cancer care website. As an oncology clinical nurse specialist, integrative oncology nurse navigator, and culinary translator, Laura has been caring for people with serious illness for over 40 years.

WM Ireland Affiliate Leader in Upcoming Webinar

May 23rd, from 11:00AM - 12:00PM ET

Bob Perry, WM Ireland Affiliate Leader, will be featured in the upcoming webinar Patient-Centered or Patient-Driven? Exploring New Ways of Patient Collaboration.

This webinar provides a valuable opportunity to come together with representatives from the world of patient advocacy, nonprofit patient organizations, and medical publishing to gain insights on

• Best practices for optimal co-creation;
• The different types and approaches that can be used;
• Why user-testing is so important;
• What value co-creation can bring to all stakeholders: patients, information producers, industry partners, and the wider healthcare community alike;
• And more.

NORD Living Rare Forum on June 7-8

Free In-Person & Virtual Registration 

Young WM Support Group Meeting

Saturday, June 1st at Noon ET

The Young WM Support Group will be having a meeting in June 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, June 1, 2024

12:00PM - 1:00PM ET

To join the mailing list for this group, contact Michelle:  Mpostek@iwmf.com

WM People of Color Support Group

Friday, June 7th at 1:00PM U.S. ET

The WM People of Color Group will have their next meeting for patients and caregivers in June. Attendees will join leaders Paula and Mike on Zoom for a sharing session, which will last approximately one hour.

Friday, June 7th, 2024

1:00PM - 2:00PM U.S. ET

To join the mailing list for this group, contact Mpostek@iwmf.com

Worried About Cancer Costs?

 Free Resource for Financial Navigation & Support

Cancer-related costs weigh heavy on patients and families. Financial Navigators from Cancer Support Community (CSC) can help. The Helpline offers free navigation for patients and their loved ones by phone at 888-793-9355 and online via live chat service. CSC also provides translation services in nearly 200 languages.

Learn more here.

For additional information and resources, visit the Financial Assistance page on the IWMF website.

In Case You Missed It: Gentle Yoga Recording

This 60- minute, all-levels mat class moves at a gentle pace, with mindful transitions up and down to the floor. Expect to use a range of tools of yoga such as breathing exercises, meditation, and yoga postures to support well-being through your cancer journey. Here’s what our WM friends attending live thought: “I really enjoyed today. Felt like every bit of me was involved!” Hazel, U.K. participant.

Visit Yoga at the IWMF for more Yoga offerings.

WM Community Corner

The magical IWMF cruise to Alaska has come to an end, but the WM community cruisers will never forget the wonderful times they had together. Thanks to all who set sail with the IWMF!

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 info@IWMF.com or visit www.IWMF.com