International Waldenstrom’s Macroglobulinemia Foundation

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International Waldenstrom’s Macroglobulinemia Foundation

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The worldwide coronavirus outbreak, declared a pandemic by the World Health Organization (WHO) on Wednesday, March 11, continues to be of great concern to WM patients and caregivers around the world.
We again encourage all patients, caregivers and families impacted by WM to remain vigilant, and to follow the daily health and sanitary precautions and the travel and assembly guidelines being promoted by major public health agencies like the World Health Organization (WHO), the U.S. Centers for Disease Control (CDC), and government agencies where you reside. Key points are provided here, and links to the latest information from the WHO and CDC are provided below.
It is worth repeating a message we provided last week: It’s important that all of us, individually and as a community, whether patient or caregiver, follow those guidelines to ensure that we can continue to do our best to live healthy, productive lives, and minimize the impact that the coronavirus will have on us and our families.
Additionally, the IWMF is taking the following actions in response to the pandemic:
  • We are encouraging all IWMF Support Groups in the United States to cancel face-to-face meetings for the months of March and April.
  • The IWMF Educational Forum Planning Committee is continuing to closely monitor the status of the spread of the coronavirus within the United States and in other countries around the world, as that will considerably impact the safety and security of travelers coming to and leaving Seattle in June. You will be updated on this as soon as there is an appropriate resolution. Rest assured – the safety and health of the WM community continues to be of utmost importance and remains a top priority.
  • We are encouraging all WM patients, caregivers, and families to follow the guidance of public health and government authorities in their countries, especially since the “average” WM patient falls into two categories that are especially vulnerable to the disease: elderly, and immunocompromised.
Over the weekend, Dr. Gwen Nichols, the Chief Medical Officer of the Leukemia & Lymphoma Society in the U.S. (and frequent speaker at the IWMF Ed Forum), posted a useful list of FAQs with responses to help blood cancer patients adjust to the new normal as the coronavirus continues to spread globally. You can find that useful advice here(link is external).
You can obtain the latest information from the U.S. CDC and the WHO at the following links:
NOTE: If you had already made plans to attend the IWMF Educational Forum that is currently scheduled to take place from June 5-7, 2020 in Seattle, Washington (for details, click here), the following advice still remains pertinent:
  • Registered attendees have the option of obtaining a full refund of the registration fee by May 22nd (it’s suggested that those who’ve registered hold on to their registration until plans for the 2020 Ed Forum are finalized).
  • Keep your hotel registration for the event until we finalize plans, as you may cancel up to 72 hours prior to check-in.
  • If you’ve booked flights, contact your airline to ascertain their policy regarding refunds or cancellations; also depending upon your particular airline, you may wish to purchase “cancel for any reason” travel insurance.
If you have questions specific to your personal health situation, please do not hesitate to contact your primary care physician and/or your blood cancer specialist.
As we all strive to self-impose quarantine measures and social distancing practices, we should remember that the IWMF does provide “virtual” support services, such as the online discussion list (IWMF Connect); Facebook (IWMF Official page and a private closed support group); and the phone/email-based Lifeline, where a fellow WMer is just a phone call or email away. Should you need social or emotional support, feel free to continue to reach out to the IWMF worldwide community and take advantage of these opportunities. NOTE: IWMF Affiliates in several countries also have country/region-specific Facebook pages and discussion groups – please visit the IWMF International Affiliates web page for further information (see list here).
In this time of global crisis, the IWMF wishes to extend its concern and support to everyone around the world who is affected by the coronavirus outbreak, and our hope continues to be for a speedy and effective resolution.
Carl Harrington
IWMF Chair of the Board
Newton Guerin
IWMF, President & CEO