The Waldenstrom’s Weekly

March 11, 2022

Volume 2, Issue 9

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

2024 Waldenstrom's Weekly Archive

2023 Waldenstrom's Weekly Archive

2022 Waldenstrom's Weekly Archive

2021 Waldenstrom's Weekly Archive

RESEARCH

Lymphoma Coalition 2022 Global Patient Survey
Week 4 Update

Update: Lymphoma Coalition has shared that the WM community has had
478 respondents. Let’s keep it up!

Have you done the Global Patient Survey on Lymphoma & CLL yet? This is a friendly reminder to please complete the survey and share your experiences as a person living with lymphoma or as a caregiver.

In the past, the WM community has led the way in responding to the survey. So much so, that they were able to provide WM-specific details for us. Let’s do it again, so that we show other folks the importance of participating in such efforts, and so that we can continue to see results specific to our disease.

All people aged 18 and over living with lymphoma, including WM, and caregivers are also encouraged to participate. It is available in 19 languages. The patient survey takes approximately 25 – 30 minutes to complete and the caregiver survey can be completed in 15 – 20 minutes.

Furthermore, as more people in each country around the world participate, the IWMF also learns more about the patient and caregiver experience in each country and this information can be used to help ensure activities and programs meet patients’ needs.

In 2020, nearly 12,000 people from around the world participated in the survey. Please join us and complete the survey today for the WM community!

COMPLETE THE SURVEY HERE

Reminder: Vaccinations, Boosters, Infections?
WhiMSICAL Needs YOUR Help to answer the question!

Thank you to everyone who has helped provide their registry updates so far.

Our goal is for 400 out of 600 in the IWMF WhiMSICAL registry to complete the new questions, so please join the COVID 400!

Please take a few minutes to answer the new Covid questions in section 19 and update section 9 (treatments) by March 31st. The data will then be generated for the WM community and medical researchers around the world.

If you are already enrolled in the IWMF WhiMSICAL Registry, you can logon to CART-Wheel here.

If you are not yet enrolled, logon to the IWMF WhiMSICAL Registry by registering at CART-wheel here and welcome aboard!

For more information, click here, or for assistance, contact whimsical@iwmf.com.

EDUCATION

Recording Available!
WMUK Peripheral Neuropathy Webinar

From the WMUK:

Dr. Gita Ramdharry from University College London Hospitals joins us to talk about how physiotherapy can help Peripheral Neuropathy (PN), as well as other ways to help people to live with this common side effect of WM.

WATCH THE REPLY HERE

Next Tuesday!
The LLS-IWMF Living Well with WM Program

A Virtual Educational Conference for Patients, Caregivers and Healthcare Professionals

Tuesday, March 15, 2022

5:30PM – 7:00PM U.S. Eastern Time

This program is designed to provide attendees with essential information that will help you participate more actively and confidently in decisions about your WM treatment and survivorship.

Waldenström Macroglobulinemia (WM) patients, caregivers, family and friends will gain a better understanding of:

WM treatment, including standard care and clinical trials
Strategies to make informed decisions about treatment
Tips for communicating with your health care team
Strategies to manage disease and treatment side effects
The impact of COVID-19 and vaccinations
Strategies for managing ongoing cancer survivorship issues, including financial and employment challenges, as well as psychosocial issues
Resources available in your local community, at cancer centers, and those provided by LLS

About the speakers:

You can learn more about our speakers by clicking here.

IWMF Global Educational Webinar

An Overview of Amyloidosis and WM with Dr. Morie Gertz

Tuesday, March 29th, 2022

12:30PM – 1:30PM U.S. Eastern Time

SPEAKERS:

About the presentation:

This program will inform participants about the cause, signs/symptoms, diagnosis, and treatment of amyloidosis.

About the speakers:

You can learn more about our speakers by clicking here.

SUPPORT

Young WM Support Group Meeting
Monday, March 14th at 7:30PM U.S. ET

The International Young WM Support Group for patients and caregivers under the age of 50 will be meeting next week!

Monday, March 14th, 2021

7:30PM – 8:30PM U.S. ET

Attendees will join Co-Leaders Ryan and Deborah on Zoom for a caring and sharing session, which will last approximately one hour.

To receive the Zoom link for this meeting, contact Deborah at deborah982@gmail.com

Calling all Caregivers!
Caregivers International Support Session
Wednesday, April 6th from 1:00PM-3:00PM U.S. ET

Speaker:
Dr. Hannah-Rose Mitchell
Memorial Sloan Kettering Cancer Center

Join Caregivers around the world for a live Zoom meeting presentation and Q&A with Dr. Hannah-Rose Mitchell.

Dr. Mitchell is a clinical health psychologist and Chief Postdoctoral Research Fellow at Memorial Sloan Kettering Cancer Center in the Department of Psychiatry and Behavioral Sciences, where she provides services to families in the Caregivers Clinic. Her research aims to reduce the burden of cancer on the family and to improve patient and family caregiver well-being.

Registration is required for this session. After registering, you will receive a confirmation email containing information about joining the meeting. If you have any questions, please contact office@iwmf.com.

SUPPORT

Bing-Neel International Support Sessions
2:30PM and 7:00PM U.S. ET on March 20th

From our IWMF Bing-Neel Support Group Leaders:

The IWMF will be hosting two Bing-Neel Support Group meetings on March 20th.

We have scheduled two meetings instead of one in order to have smaller groups and to accommodate many different time zones. The earlier meeting will be at 2:30 pm and the later meeting at 7 pm (Eastern Time, GMT-4) The meeting format will be what’s called “Caring and Sharing” and will provide Bing-Neel patients and caregivers a chance to meet others who have a similar diagnosis from around the world.

We will also share a brief pre-recorded update from Dr. Shirley D’Sa who treats WM and BNS patients in the UK.

The meetings will be hosted by our IWMF Bing-Neel Lifeline volunteers Julie Davidson (U.S.), Peter Freese (Australia), Stuart Quick (UK) and Eileen Sullivan (U.S., IWMF volunteer).

Registration is required for these meetings. After registering, you will receive a confirmation email containing information about joining the meeting. If you have any questions, please contact office@iwmf.com.

March 20th at 2:30PM ET

March 20th at 7:30PM ET