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The Waldenstrom's Weekly
October 6, 2023
Volume 3, Issue 37
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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. | |
-Walk for Waldenstrom's - | |
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WALK FOR WALDENSTROM'S SPOTLIGHTS
October Walk: Eastern Massachusetts
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The Eastern Massachusetts Support Group is hosting a Walk for Waldenstrom's on Sunday, October 15th from 12:00PM - 2:00PM. It is a Bring-Your-Own-Lunch picnic, followed by a walk around the Cedar Hill Girl Scout Camp in Waltham. Please contact Eileen Sullivan at [email protected] to RSVP & for directions since the group will be using a back entrance to the walk site. | |
Cathy Zimmerman: Running for Waldenstrom's | |
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Cathy Zimmerman (Colorado, US) is RUNNING for Waldenstrom's in THIS weekend's Chicago Marathon!
From Cathy, "Why am I running the Chicago Marathon? I received "the call" from my primary care doctor, when I was in Chicago for my High School Reunion, in October, 2019. The phone message said to check into a hospital right away. All of the levels on my CBC were dangerously low. I flew home the next day, missed the reunion, headed straight to the hospital from the airport, only to be diagnosed a few days (and a bone marrow biopsy later), with Waldenstrom's Macroglobulinemia.
In May, 2020, I came down with a life-threatening case of COVID and made a deal with myself - I would do something "big" if I ever got rid of that green oxygen tank and was back to normal. The race is on October 8th, and I will be flying in to Chicago from Denver. I am number 54606 and you can follow me on my journey on this run because there is a GPS in the bib that I will be wearing. I have never run 26 miles. The most I have trained is 18.64, but those additional 7 plus miles shouldn't be hard, right?"
Good luck Cathy!
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Chicago/SE Wisconsin Walk for Waldenstrom's | |
Thank you to the Chicago/SE Wisconsin Support Group for hosting a Walk for Waldenstrom's on September 30th. Led by Don and Mary Brown, the group of 15 enjoyed their nature walk at Fullersburg Woods Nature Education Center. The group has raised over $9,000 dollars, congrats! | |
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Saturday, October 21st
Hear from experts, meet patients and families and talk to healthcare professionals at the FIRST EVER European Patient Forum co-hosted by IWMF and WMUK!
We’ll be live in Birmingham (United Kingdom) and Amsterdam (The Netherlands) covering everything you want to know about living with WM.
Our joint sessions will be streamed between our two locations, and will conclude with an ‘Ask the Healthcare Professional’ panel where you may ask your questions LIVE to a panel of nurses, doctors and allied healthcare professionals from across Europe.
The event is an exciting first-of-its-kind for both our organisations, combining our resources to provide even MORE expert advice and personal support for people affected by WM across Europe.
Click HERE for more information, agenda & registration.
We hope you can join us!
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Registration Open for October Wellness Gathering | |
Wellness Recording Available! | | |
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T'ai Chi and
Qi Gong for Cancer Care
With Rami Rones
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Enjoy the recording of our very first Educate and Empower Webinar series - and huge thanks to Rami Rones for teaching us about how T’ai Chi and Qi Gong can support those affected by WM. We had 130 registrations and over forty live attendees, and we’ve gotten a lot of great feedback! “Rami is such an excellent instructor. I always had a hard time in a T’ai Chi class and with Rami, there’s such a difference - and no pain!” We hope we can bring Rami back for more mind-body programming soon. | |
Upcoming Triage Cancer Conferences | |
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Get the details you need to navigate insurance and work, manage medical bills and finances, prepare documents, plan ahead, and so much more.
Get tips for picking a health insurance plan during open enrollment (Marketplace or employer), understanding the other benefits that may be available, using an FSA and what to do with unspent money, and much more.
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Lymphoma Canada Patient & Caregiver Conference | |
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From Lymphoma Canada:
Following the continued success of our patient conferences, Lymphoma Canada will host its 7th Annual Lymphoma Patient Conference virtually on Tuesday, October 17th - Thursday, October 19th, 2023.
This conference will be held virtually, and admission is free of charge, meaning anyone can attend and learn valuable information about lymphoma and CLL. The conference will include presentations from expert faculty and specialists from across Canada covering topics ranging from treatment-specific information to how novel lymphoma therapies are approved in Canada, with many more in between. As it relates, there will also be a subtype session on Waldenstrom Macroglobulinemia. A full schedule of all the featured speakers and what topics they will be covering can be found HERE.
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Today at 2:00PM US ET! Cardio Flow for WM | |
What is Cardio Flow? This medium-paced class will feature cardio, strength, and balance training to safely get the heart rate up for those managing WM. Come as you are, and have a little fun while you’re at it! Contact Ann for the zoom link at [email protected]. | |
Save the Date: Bing-Neel Syndrome Support Group | |
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From Bing-Neel Group Co-Leader, Julie Davidson:
"We are going to try something a little different for the fall Bing- Neel Support Group meeting on Sunday, November 19 at 1 PM and 7 PM (EST-US). There will be a couple of our own members presenting their stories. Then there will be a fun participation presentation by Joseph Hawthorne ACSM-CPT, AKC, RBT, CSC, Owner of Block Fitness (blockfitco.com)."
Registration and further details to come soon!
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New Resource from Triage Cancer:
Military, Veterans, & Cancer Resource Page
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From Triage Cancer:
Members of the U.S. Military and U.S. Veterans have access to specific benefits, programs, and resources that may be useful after a cancer diagnosis. It is valuable to access the benefits available to you and to understand how they may work with other benefits that you have. For example, you may have access to health insurance through your military service, and also be eligible for Medicare. The new resource page shares information about Military health insurance, Veterans Administration programs, and other helpful resources.
Check it out Here!
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The Patient Access Network (PAN) Foundation:
WM Fund OPEN for Eligible U.S. Patients!
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The PAN Foundation is helping patients afford their out-of-pocket costs with annual grants of $7,000.
We know it can be difficult to afford the out-of-pocket costs of treatment for WM. If you’re 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 Patient Access Network (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 WM fund below.
About PAN’s WM fund
PAN’s WM patient assistance fund provides $7,000 per year in
financial assistance to pay for the deductibles, co-pays, 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 WM.
· Reside and receive treatment in the U.S. or U.S. territories
· Be prescribed a medication or product that is listed on PAN’s list of covered medications
· Have an income that falls at or below 500% of the Federal Poverty Level.
· Have Medicare health insurance that covers the qualifying medication or product.
Review the full eligibility criteria HERE 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. Visit PAN’s online patient portal to get started and check out their portal how-to guides for step-by-step instructions on common tasks like creating an account and applying for assistance. You can also reach PAN by phone at 1-866-316-7263, Monday through Friday, 9 a.m. to 7 p.m. Eastern Time.
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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 [email protected] or visit www.IWMF.com | |
IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | [email protected] | 1-941-927-4963 | | | | |
