The Waldenstrom's Weekly
September 9, 2022
Volume 2, Issue 34
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Because of YOU, the IWMF can provide FREE programming including support, education, and information for all WM community members. |
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- The Walk for Waldenstrom's -
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IWMF on the NEWS!
Check out Alix Redmonde, IWMF’s Director of Development and Communications raising WM awareness and promoting the Walk for Waldenstrom’s. Click HERE to watch the segment!
Walk for Waldenstrom’s 2022
Sunday, September 18th at 10:00am (ET).
Join us to raise awareness and support for the International Waldenstrom’s Macroglobulinemia Foundation (IWMF).
Walk for Waldenstrom’s is a 1-mile walk/run fundraising and awareness event for the IWMF and global WM community.
It’s FREE to register!
Join the Walk for Waldenstrom’s from anywhere in the world.
Walk in a park, on the beach, in your neighborhood (bring the dog and order them an IWMF bandana or T-shirt HERE), from the comfort of your own home, or walk on the treadmill.
Don’t want to walk? No problem!
Pick an activity you enjoy… Pickleball, bridge, even reading a book.
You can create your own fundraising page and reach out to your friends and family for support, or sponsor someone else that created a page for this event.
Need help creating your page?
Email Donna Cutillo at [email protected], and she will walk you through it-no pun intended!
Funds raised from the Walk for Waldenstrom’s make a big difference to the global WM community – these funds support vital WM research, and allow IWMF to continue offering free resources, education, and materials to everyone living with WM.
In appreciation of you joining the Walk for Waldenstrom’s
Raise $100 and receive:
- IWMF Walk for Waldenstrom’s T-Shirt
Raise $800 and receive:
- IWMF Walk for Waldenstrom’s T-Shirt
- Complimentary registration to a future IWMF Educational Forum
Raise $2,000 and receive:
- IWMF Walk for Waldenstrom’s T-Shirt
- Complimentary registration to a future IWMF Educational Forum
- A redeemable $300 travel certificate for you or a friend to attend a future IWMF Educational Forum
Because WM is a rare and little-known disease, please spread the word by sharing YOUR story, explaining what WM is and, by asking everyone you know to support IWMF.
Thank you for being a part of Walk for Waldenstrom’s.
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Join Alix for a Pre- Walk for WM Exercise Class!
NEXT Tuesday, September 13th, at 1:00PM U.S. ET
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Join IWMF’s Alix Redmonde as she ditches her 6 inch heels and puts on her sneakers to teach Total Body Workout (TBW) designed especially for our WM community members.
Everyone is welcome, TBW is appropriate for all abilities whether you are sitting or standing there are modifications for all.
Alix understands challenges and benefits of exercise as a former smoker and carrying an additional 63 pounds for more than half her life. Exercise helped her recover from a back breaking car accident when she opted for 6 months of rehab allowing her to avoid surgery.
At first, Alix couldn’t stand straight for 3 months and could only walk down her driveway. Eventually, she walked to the house next door and counted squares on the sidewalk completing her neighborhood walk.
Total Body Workout starts with flowing movement to warm up in preparation of stretch, the stretch is followed by cardiovascular moves and a cool down. The strength portion can be performed with or without weights. And if you want to lift but don’t have access to free weights, then a couple of cans of soup, water, or shampoo bottles will do!
Bring a bottle of water, a towel and make sure the area is clear of rugs or anything you can trip on.
Most importantly… bring your smiles and the expectation of a good time! Contact [email protected] for the Zoom link!
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- Special Announcements - |
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The IWMF and Scientific Education Support (SES) Announce New Strategic Collaboration |
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The International Waldenstrom's Macroglobulinemia Foundation (IWMF) and Scientific Education Support (SES) are pleased to announce a strategic collaboration for patients with Waldenstrom's macroglobulinemia. The aim is to achieve improved disease awareness and education through initiatives using SES’ expertise in communications and medical education and IWMF’s patient leadership in Waldenstrom's macroglobulinemia.
Carl Harrington, Chair of the global WM Awareness-Building Initiative, says “The IWMF is very excited to be working with SES to ensure that all patients with WM and their caregivers never feel they are alone when faced with our rare, incurable but treatable cancer. The mission of the IWMF is to support and educate everyone affected by WM while advancing the search for a cure. We believe this initiative will be critical to accomplishing our mission. Patients with WM, globally, will benefit enormously.”
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IWMF Welcomes a New Team Member! |
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International Waldenstrom’s Macroglobulinemia Foundation (IWMF) welcomes our newest team member!
Mark Black joins the IWMF as our new Development Associate.
Mark’s primary responsibility is managing and maintaining the IWMF database which provides leadership with information and analytics necessary to maximize education, information, and support programs, as well as all aspects of development/fund-raising.
Born in Rhode Island, Mark was raised in Massachusetts. He earned a bachelor’s degree from Bentley University in Waltham, MA. He then spent 8 years in New Orleans and is a proud Alumni of Tulane University where he received an MBA.
Mark has travelled globally and is an adventure seeker. One of Mark’s favorite places is Wyoming where he spends time hiking in Grand Teton National Park and enjoying nature. Mark is an animal lover and has a soft spot for rescues.
Mark likes to explore the analytical side of business and has nearly 20 years’ experience working in finance, as a personal banker with Fifth Third Bank and a Mortgage Loan Officer at J P Morgan Chase and Wells Fargo.
Mark is thrilled to bring his skills to IWMF in an effort to move towards our vision of a world without WM.
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IWMF Survey Closes September 30th
Reminder: Please complete the IWMF Needs Assessment Survey. Your opinion matters!
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The IWMF continually strives to best meet the needs of all people affected by WM. As such, the organization is undertaking a strategic planning process that starts with you, our constituents. If you haven’t already done so, please fill out this survey regarding the IWMF’s education, information, and support programs; it will only take about 15 - 20 minutes. The survey closes on September 30, so be sure to respond before the end of the month.
Many thanks to the nearly 400 people that have already participated! Your input is invaluable in helping us deliver impactful programs and services.
Peter DeNardis, Chair of the IWMF Board of Trustees
Newton Guerin, President & CEO
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News Alert!
Patient Perspective Video Series
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WE ARE LOOKING FOR YOU!
A Patient Perspective Video Series is being created to help WM patients and their caregivers gain more insight into living with this rare disease.
Please watch the recruitment video below and learn more about why volunteers are needed to help make this project a reality.
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You can email us at [email protected] with any questions. We look forward to hearing from you!
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IWMF Bing-Neel Support Group Meeting
October 9th, 2022
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Please join us as we gather online, via Zoom, to interact with each other and to listen to a wonderful video presentation by Dr. Monique Minnema on Bing Neel Syndrome. You may have seen Dr. Minnema in the “Ask the Doctors” panel at the recent Ed Forum. Monique Minnema was trained as both an internist and a hematologist at the Academic Medical Center, Amsterdam and the University Medical Center, Utrecht. She started working as a hematologist in 2005 at the department of Hematology, UMC Utrecht. She specialized in the diagnosis and treatment of B cell malignancies, especially plasma cell disorders, such as Multiple Myeloma, AL amyloidosis, and Waldenström’s Macroglobulinemia. Prof. Dr. Minnema initiated and currently supervises the hematology clinical research team, which coordinates and supports all clinical studies at the department of Hematology. Her main focus of clinical research is the development of novel therapies (both cellular and drug) for plasma cell disorders and lymphoma.
Date: October 9, 2022
Times: 2:00 PM (U.S. Eastern Time)
7:00 PM (U.S. Eastern Time)
This meeting is for all those who have Bing-Neel, care for someone with BN or are interested in finding out more about the syndrome.
Please register below. You must register to receive the link to attend the meeting. For registration or other questions, please email [email protected] or [email protected] .
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We can’t wait to see you there!
Julie Davidson
Peter Freese
Stuart Quick
Bing Neel IWMF Lifeline Volunteers
Eileen Sullivan, Meeting Co-coordinator
IWMF Volunteer Support Group Leader, Massachusetts, USA
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Contact Shelly Postek at the IWMF Home Office ([email protected]) to be added to any of the mailing lists with our WM community instructor, Ann MacMullan.
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We have been building out a website with links to all the presentations on our YouTube page. Check it out HERE!
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Have you ordered IWMF Swag? Click the photo below!
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IWMF is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. 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
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