The Waldenstrom's Weekly

May 10, 2024

Volume 4, Issue 18

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 -

Thanks to ALL who Joined the IWMF Ed Forum!

Thank you for taking the time to attend the 2024 Ed Forum. Your participation contributed greatly to the success of our event. We hope you found the presentations and discussions valuable and engaging. As we strive to improve each year, your feedback is incredibly important to us. Please take a moment to share your thoughts for the 2024 Ed Forum at the button below:

We look forward to hearing from you and hope to see you again at future events. Stay tuned for announcements about the handouts and recordings!

Waldenström France is Seeking Volunteers

From Waldenström France:

We are looking for an English speaker, based in France, to manage our relationship with the IWMF. As part of the reorganization of our Board, we are looking for volunteers to strengthen our team in the areas of accounting, secretarial services, and communications. Please contact Patrice Ostermann if you are interested in volunteering at patrice.ostermann@waldenstromfrance.org.

- Research -

WhiMSICAL Investigators Need YOUR Help!

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 -

CancerCare Workshop for Caregivers on Monday:

Caring for Your Loved One with Cancer

Monday, May 13,1:30 – 2:30 pm, Eastern Time

Topics Covered

• Definition of a Caregiver
• What Research Tells Us About Caregivers’ Well-Being
• Caregiving for an Older Adult
• Caregiving for a Younger Adult
• Couples, Partners, Siblings, & Friends
• Challenges for Caregivers of Cancer Survivors
• Family, Partner, & Friend Communication
• Care Coordination Challenges & Tips
• Stresses on Family, Partners, Friends, & Loved Ones
• Coping with Holidays, Birthdays, & Special Occasions
• Managing Family, Friends, Partners, & Traditions
• Long-Distance Caregiving
• Practical Tips for Managing Caregivers’ Stress
• Strategies for Self-Care
• The Increasing Role of Telemedicine Appointments
• Guidelines to Prepare for Telehealth/Telemedicine Appointments, Including Technology & Prepared List of Questions
• Questions for Panel of Experts

Educate and Empower Webinar on May 30th:

Eating Well to Live Well with WM

Join Chef and Integrative Oncology Nurse Navigator Laura Pole to learn how nourishment can support your health and help manage some common symptoms of WM, such as fatigue. Go beyond basic nutrition by exploring the principles of health-supportive food selection that emphasize nourishment on a holistic level. 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.

Lymphoma Research Foundation Webinar:

Information for Relapsed/Refractory Patients

Topic

This program will cover topics for lymphoma patients who have relapsed or whose disease is no longer responding to treatment. It is geared towards patients and caregivers.

Program Overview

• Lymphoma Overview
• Who Might Experience Relapse?
• Treatment Options Available to Relapsed/Refractory Patients
• Questions to Ask Your Health Care Team
• Relapsed/Refractory Lymphoma and CLL Resources
• Question and Answer Session

Feeling overwhelmed by all of the practical and financial issues that come with a cancer diagnosis? Our partner Triage Cancer is hosting a FREE conference on May 17 and 18 for individuals diagnosed with cancer, caregivers, and oncology healthcare professionals. We look forward to Triage Cancer CEO, Joanna Fawzy Doran, speaking at our annual Ed Forum on Sunday, May 5th!

Upcoming Webinar from UICC and the WHO:

Meaningful Engagement of People Living with Cancer 

Thursday May 23rd at 8:00AM EDT

Positioning people living with cancer as active participants in all aspects of their health through patient-centered research and care not only results in better clinical outcomes, but is also essential to achieving the right to the highest standard of health and its equitable realization.

In this Virtual Dialogue, The Union for International Cancer Control (UICC) and the World Health Organization (WHO) will highlight the importance of engaging people with lived experience in the co-creation of policies, programs, and services related to them.  

PAN WM Fund Expansion for U.S. Patients with ALL insurance, Not Just Medicare!

If you’re a patient or caregiver 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 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. You can find more information about their Waldenstrom Macroglobulinemia (WM) fund below. If the fund is closed, sign up for the wait list to be notified when it’s time to apply.

Waldenstrom Macroglobulinemia fund

The PAN Foundation’s Waldenstrom Macroglobulinemia (WM) fund provides $3,250 per year in financial assistance to pay for the deductibles, copays, and coinsurance costs associated with WM treatment. To qualify for funding, patients living with WM must meet the following eligibility requirements:

• Be getting treatment for Waldenstrom Macroglobulinemia.
• Have an income that falls at or below 500% of the Federal Poverty Level.
• Have any type of health insurance, including private or commercial insurance and Medicare, that covers the qualifying medication or product.*New Expansion!*
• Be prescribed a medication or product included in PAN’s list of covered medications.
• Reside and receive treatment in the U.S. or U.S. territories (U.S. citizenship is not required).

Review the full eligibility criteria and check if you qualify.  

How to apply

It’s easy to apply and you’ll learn if you’re approved for a grant immediately. If you’ve never applied at PAN before, call their contact center at 1-866-316-7263 Monday through Friday, 9 a.m. to 5:30 p.m. ET. If you have previously applied for a PAN grant or joined a disease fund wait list with PAN, you can apply through PAN’s online patient portal or by phone.

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

"I have been doing Rami's most recent class every day since you sent me the links and it feels great! I can feel it strengthening right to my core, which I have been missing. I really appreciate your ongoing support." – Karen P. 

Join Rami Rones 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 for the Zoom invitation or recording: anngrace@iwmf.com.

Yoga Nidra - Friday, May 17th at 2:00PM EDT

“Very restorative and calming…just what I needed today!. I feel great now. So grateful!” -Cheryl, BC Canada

Rest is a powerful and much-needed medicine for many of us. During a calm state like the one we produce during Yoga Nidra, we stimulate the “Rest, Digest, and Heal” side of the nervous system, allowing our immune systems to function at full bore. Accessing this innate state of relaxation is one of our goals during Yoga Nidra, a guided meditation where we are given cues to release effort and explore the internal mind-scape. Research on Yoga Nidra has shown that it can decrease stress levels, improve sleep quality, elevate well-being, and increase the mindfulness of the participants. Our 30-minute session can be done from bed, the couch, or an infusion chair. Reach out to anngrace@iwmf.com to receive our Zoom invitation and follow-up recordings.

WM Community Corner

Volunteers are the lifeblood of IWMF. One very special volunteer, Betty Walters, befriended and advised the group going on the Post Ed Forum Cruise to Alaska. We caught up with Betty in Hoonah, Alaska, where her daughter is the principal of Hoonah City School. Betty and her friend Mary gave us a tour around town that we will never forget. If you would like to volunteer, visit us at https://iwmf.com/volunteerism/.

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