The Waldenstrom's Weekly
October 7, 2022
Volume 2, Issue 38
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Your generous contributions allow the IWMF to provide information, education and support programs free of charge to all WM community members. |
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- Special Announcements -
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The October 2022 IWMF Torch (Issue 23.4)
is Now Online!
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Greetings to WMers around the world!
It’s that time again to remind you that another IWMF Torch magazine will soon be posted! This month, you’ll enjoy a variety of articles that we hope will support, educate, and give you cause for hope in your Waldenstrom’s (WM) journey.
As we immunocompromised WMers still grapple with living in a COVID world, we do find encouraging news on the medical front when it comes to treatments for WM. If you are contemplating a first, or another, treatment in the near future, as I did this year, you’ll find Dr. Jonas Paludo’s cover article, “A Toolkit for Understanding the Treatment of Waldenstrom Macroglobulinemia,” very useful. The nice thing now is that there are many options, but that is what can make choosing so difficult.
Medical News Roundup also covers those clinical trials that include WMers as participants, so a trial might also enter into your considerations for treatment.
The amount of funding that the IWMF uses to support WM research is stunning, and two reports covering the latest awards are very interesting reading. They will reinforce the realization that, with adequate funding, a cure has to be an eventual outcome. Meanwhile, the research gives us the possibility of new drugs which can give us longer and healthier lives.
So sit back and enjoy all the regular features that the Torch has to offer. We encourage suggestions for comments and future articles; don’t hesitate to get in touch!
Thanks for all your support!
Shirley
Shirley Ganse
Editor, IWMF Torch
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Team IWMF Walk for Waldenstrom’s |
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From Alix Redmonde, IWMF Director of Development & Communications
Hello amazing community members,
Walk for Waldenstrom’s 2022 kick off on September 18th was a huge success. With YOUR support we raised almost $50,000 dollars and there’s still an opportunity to participate and make a difference through the end of 2022. Just go to IWMF.com and register.
You sent in great pictures of friends and family including your fur babies which we shared on both our Facebook pages and in Waldenstrom’s Weekly. Now Team IWMF in Sarasota wants to share our experience.
Leading up to the walk we made it our mission to tell as many Suncoast residents about Waldenstrom’s Macroglobulinemia (WM) as possible. We wore our T-shirts and answered questions to raise awareness.
Here are some pictures of the home team and local Suncoast supporters that participated in Walk for Waldenstrom’s.
IWMF home team pictures
Donna Cutillo, office & project manager
Sara McKinnie, manager of meetings & partner engagement
Alix Redmonde, director of development & communications
Mark Black, development associate.
Nancy von Lazar & Khloe, IWMF supporter
Claire Ewing, IWMF supporter
Robin Tucker, finance manager & husband John Tucker
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Patient Access Network Foundation (PAN) Webinar:
New Medicare Reforms are Law - What's Next?
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October 13, 2022
2:00PM U.S. ET
Do you have questions about the new Medicare reforms passed in the Inflation Reduction Act? The PAN Foundation is hosting a free webinar on Thursday, 10/13 at 2 p.m. ET. Learn how these changes will impact people with Medicare insurance in the coming months.
In this webinar, PAN will discuss:
-A brief history of the Medicare system
-Five key Medicare reforms that were signed into law in August
-When people with Medicare insurance will start saving money
PAN’s Executive Vice President Amy Niles will break down five key, cost-saving reforms, the timeline, and what you need to know if you have Medicare Part D insurance.
The webinar will be recorded and emailed to everyone who registers, whether or not they attend the live presentation.
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GRYT Health Global Virtual Cancer Conference
November 2-5, 2022
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From IWMF Partner, GRYT Health:
Cancer doesn’t care who you are, what you do, or where you live. It affects everyone, whether personally or through family and friends. That's why the team at GRYT Health would like to invite everyone to join their 4th annual Global Virtual Cancer Conference (GVCC22) on November 2-5,2022.
GVCC is 100% virtual, 100% free, and 100% for everyone! Registration ensures you can attend during live sessions or get notified as soon as recorded sessions are available for on-demand viewing.
Registering for GVCC22 gains you access to:
- 4 days of interactive and informative sessions
- Resources for you to explore from patient advocacy groups
- Plenty of time for connection
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WMUK Patient-Doctor Summit
November 19th, 2022
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From the WMUK:
We are absolutely thrilled to be launching this year’s Patient-Doctor Summit on Saturday 19 November at Austin Court, Birmingham and we'd love you to join us.
This is our first fully hybrid event, so you have the choice to attend in person or virtually, and we’re really looking forward to welcoming you in person after so long.
In what promises to be a fantastic event, we’ll be bringing you the latest from the world of WM, giving you direct, exclusive access to WM experts and the ideal opportunity to connect with other WM patients.
Tickets are £20 for attending in person, and £5 for those attending virtually. If you can donate more then all the better, but equally, let us know if the cost will prevent you from coming. We want everyone to have the opportunity to attend and know many of you are concerned about the current cost of living crisis.
We will also be making sure masks and sanitiser are both available to help you feel at ease.
We can't wait to see you.
WMUK
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THIS SUNDAY, October 9th
IWMF Bing-Neel Support Group Meeting
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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 and IWMF Volunteer
Support Group Leader, Massachusetts, USA
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NEXT WEDNESDAY!
Peripheral Neuropathy Support Session
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Join the International PN Support Group for TWO presentations and a Q&A session with Dr. Michelle Mauermann AND
Dr. Narayan Kissoon!
October 12th, 2022
12:45PM - 2:15PM U.S. ET
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Dr. Michelle Mauermann
Mayo Clinic
Presentation Title:
Peripheral Neuropathy Diagnosis and Evaluation
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Dr. Narayan Kissoon
Mayo Clinic
Presentation Title:
Neuropathic Pain Management
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Extramedullary WM Discussion Group
October 23rd, from 1:00 - 3:00PM U.S ET
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How rare is Extramedullary WM? We’ve heard from WM expert docs that it is so rare that many WM doctors have never seen a case, yet apparently there are a number of us who certainly know that we exist. We (The IWMF) would like to try and connect folks who have been diagnosed with any type of WM/LPL lesions/tumors outside of the “normal” regions of bone marrow, lymph nodes and spleen. In addition to being able to meet one another and share stories, we would love to be able to collect enough information to be useful for WM researchers and to raise awareness in the WM community.
We will meet via Zoom on Sunday afternoon, October 23 from 1-3 pm US ET. You will need to pre register for this meeting HERE.
If this time doesn't work for you, but you’d like to be included in our information gathering/sharing effort, please contact either
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WM Community Corner
Chris Edgerton Completes his Bike Ride from Vancouver to Whistler
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Chris Edgerton wasn’t sure he was ready for the ride of his life when he took on the challenge of the RBC Whistler GranFondo Forte, a 152 km (97-mile) ride from Vancouver to Whistler with elevations of 10,000 feet to be climbed in a single day.
He had completed other rides including the Ride across America but hadn’t cycled for more than three years nor ridden 100-miles in one ride since 2018. But he made the commitment and started training.
Somehow, he knew he could finish this ride. He didn’t know how long it would take him, but he was determined.
He trained in extreme heat, day, or night, even when it was raining. Chris turned his garage into a state-of-the-art cycling center with an elevated bicycle and he used Zwift virtual training for cycling.
Chris embarked on the BRC Whistler GrandFondo Forte which he describes as basically three different rides in one starting at sea level. The biggest challenge was climbing 3,000 ft and around 13 miles up Cypress Mountain in the first leg of the ride. Chris said he knew if he completed this phase, he would make it.
His training coach Julie provided Chris with the physical and nutritional support to achieve this monumental challenge and wife Deirdre was waiting for him at every stop to offer support, hydration and be his biggest cheerleader.
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The paragraph below is from Chris’s blog and chronicles taking him over the finish line.
Obviously being male and 60 I didn’t let myself enjoy a tear or two, resorting to the British stiff upper lip and pull yourself together instead. I turned left to the finishing straight and happily pedaled the final few hundred yards to the finishing banner. I spotted Deirdre just as I approached the line and heard her shouts of support as I finally freewheeled under the arched finish line. It was over, I had completed the RBC Whistler GranFondo Forte in 9 hours 53 Minutes and 49 seconds.
Chris was diagnosed with Waldenstrom’s macroglobulinemia (WM) in 2017 and decided to live his best life with the disease. He also picked up cycling and started raising much needed for money for WM research donating to the International Waldenstrom’s Macroglobulinemia Foundation (IWMF).
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Click below to get your IWMF Swag, and be sure to send a picture to [email protected] to be featured in the WM Weekly !
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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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