International Waldenstrom’s Macroglobulinemia Foundation

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The Waldenstrom’s Weekly

June 11, 2021

Volume 1, Issue 13

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

Education

The IWMF is excited to share that we have a new platform host for our Virtual Events, which includes Global Educational Webinars and Ed Forum Month in October. Check out our new IWMF Events site HERE, and register for our next program!

 
 

Cancer Legal Resource Center Webinar:
Advanced Planning for People with Cancer
June 17th, from 12:00PM – 1:00PM U.S. PT

This webinar is geared towards U.S. Patients

Cancer Legal Resource CenterThe COVID-19 pandemic has reinforced that a person’s health can change rapidly. Whether affected by COVID or not, it’s a reminder that a person with cancer may require more specialized care. By planning in advance, people diagnosed with cancer can help ensure that their wishes about treatment will be followed.
This webinar will encourage people to plan ahead to ensure that their loved ones – and assets – are protected. It will provide an overview of advanced healthcare directives, powers of attorney for financial affairs, and wills and trusts.
REGISTER HERE

RESEARCH

WhiMSICAL Research

Recording Available!
WhiMSICAL Registry Update

 

Last week, Dr. Judith Trotman, Dr. Ibrahim Tohidi-Esfahani, and Andrew Warden from WhiMSICAL (Waldenström’s Macroglobulinemia Study Involving CArt-wheeL) met with North American Support Group Leaders to discuss current data results and to ask for YOUR help!
 
WhiMSICAL is a patient-driven, researcher developed and maintained global registry of WM patient-entered data – the first and only one of its kind! It captures treatment and quality of life data, and now includes questions on COVID-19 infection and vaccination in WM.The IWMF encourages everyone to participate – the more patients that sign up, the stronger their data! Patients across the globe can easily join the registry and complete the online questionnaire. 
 
The WhiMSICAL project has collected data from almost 500 WM patients world-wide, and results have been published in a leading medical journal (the American Journal of Hematology). In order to make this data more relevant to WM researchers, there is a push to increase the number of participants to 1,000 by the end of June, and to have current participants regularly update their data.
 
If you would like to take part, click here to register. Once
logged in, consent to participate online (“My consent details”) and enter your information. This can be completed in multiple sittings and updated over time.Your data cannot be utilized for research until your consent has been given.
 
For more information,visit: https://wmozzies.com.au/index.php/whimsical/, or email whimsical@iwmf.com.
VIEW THE REPLAY
WhiMSICAL Research

CanCope: Online Wellbeing Programs to Support Cancer Survivors After Treatment

 

For WM Patients in Australia, Canada, USA, United Kingdom, and New Zealand ONLY:
CanCope is a mental health research study running free online wellbeing programs for cancer survivors. The online programs are developed by mental health professionals who acknowledge how difficult it can be to cope once primary treatment comes to an end. They also acknowledge that it isn’t always easy to reach out for help!
The CanCope team is currently looking for cancer survivors (i.e., anyone who has finished primary treatment, such as chemo, surgery, or radiotherapy) to take part and contribute to meaningful mental health research. The programs take about 8 weeks to complete, are completely free, and can be completed from any location in your own time.
If you are a cancer survivor and would like to be involved, you can read more HERE or you can sign-up directly HERE.
If you have any questions please email
psych.cancope@monash.edu – the CanCope team are
more than happy to chat with you via phone/email and provide additional information.
SIGN UP HERE
WhiMSICAL

Board Member of WMFC Raised Over $32,000 Walking for WM Research

Congratulations to Paul Kitchen, WMFC Board Member and IWMF International Affiliates Chair, for walking over 300km throughout the month of May in order to raise money for WM Research! Paul raised over $32,000 and walked 343.4 kilometers.
Way to go, Paul!
CLICK HERE TO CHECK OUT PAUL'S JOURNEY!
LLS Logo

Leukemia & Lymphoma Society
U.S. National Patient Registry Update

From the Leukemia & Lymphoma Society:

 
COVID-19 vaccine safety data is now available on our website
With the help of citizen scientists like you, we have collected and analyzed vaccine safety data from more than 3,500 Registry participants. The results show that vaccine side effects in blood cancer patients are very similar to side effects in healthy volunteers who took part in the vaccine clinical trials. This should help reassure cancer patients yet to be vaccinated about vaccine safety and tolerability and give their healthcare professionals important initial safety data specific to this at-risk population. 
 
COVID-19 vaccine antibody data expected later in 2021
We continue to gather and analyze the antibody data from thousands of study participants. Full results are expected later in 2021 and we will share results with participants. But in the meantime, we are seeing evidence that some blood cancer patients do not mount a measurable antibody response to the COVID-19 vaccine. 
 
A follow-up T-cell study is beginning in mid-June
Finally, we wanted to let you know about a follow-up study kicking off this month to assess another type of immune response to COVID-19 vaccines. This follow up study, which is invitation only, is looking at T-cell responses in a subset of people who are participating in the antibody study. 
 
An important note about COVID-19 Antibody and T-cell tests
Right now, we don’t fully know what seronegative antibody tests mean, but what we’ve seen so far tells us that immunocompromised patients, including those with certain blood cancers or undergoing certain treatments, are different than the general population and may be at risk. This does NOT mean that vaccination is futile. It does mean blood cancer patients should continue to follow good prevention guidelines, including wearing masks, social distancing, frequent hand washing, avoiding crowds and poorly ventilated indoor spaces.
 
If you have any questions, please reply to PACT@LLS.org or call (844)-696-7228.

SUPPORT

LLS Logo

Leukemia & Lymphoma Society
Re-Opening of Patient Travel Assistance Fund

For U.S. Patients:
The LLS has announced the re-opening of the Susan Lang Pay-it-Forward Patient Travel Assistance General Travel Fund. The portal and the call center are open for applications for this fund now.
Applications can be submitted via phone at 877-557-2672 (8:30 a.m. to 5:00 p.m. ET) or via the online portal (24/7). For general information, eligibility criteria, and covered expenses, please visit the webpage HERE.
Patients are only eligible for one travel award during a 6 month award period. Patients cannot have a local travel award and a national travel award within the same 6 month award period.
Other LLS funds open and accepting applications (Please click the links below for fund eligibility requirements and details):
*Please note that funding is limited for these programs
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Thanks to You!

The IWMF is able to offer our education, information and support programs free of charge, thanks to the generosity of WM community members like you.
Please consider a gift of support by clicking below.
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