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The Waldenstrom's Weekly
September 15, 2023
Volume 3, Issue 34
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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. | |
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From Lymphoma Coalition:
World Lymphoma Awareness Day (WLAD) is held on 15 September every year and is a day dedicated to raising awareness of lymphoma, an increasingly common form of cancer. It is a global initiative hosted by the Lymphoma Coalition.
In 2023, the global network of lymphoma patient organisations is saying We Can’t Wait to Focus on Our Feelings.
Too often when someone is living with lymphoma, the psychological and emotional challenges that affect how people are feeling are overlooked. But learning to cope with challenging feelings can have many benefits including closer relationships with family and friends, feeling more connected with yourself, and being better able to live in the moment.
www.WorldLymphomaAwarenessDay.org
#WLAD2023
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From New Zealand: Mel's Story | |
"In August 2020, at the age of 34 I was diagnosed with WM. The diagnosis came out of the blue as I was a young, fit and healthy mother to four beautiful children who were aged 6, 4, 2, and 9 months." | |
-Walk for Waldenstrom's - | |
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From Annette Preston, IWMF Director, Donor Engagement:
YOU have helped raise almost $45,000 for the Walk for WM so far, AMAZING! Please join us this September to help raise awareness and support of WM and the IWMF through our Walk for Waldenstrom’s. We have coordinated our Walks throughout September to coincide with Blood Cancer Awareness month. Please join us in Sarasota, Florida on Saturday the 16, which has been organized by Shelly Postek and Sharon Piotrowski. If you live in the Sarasota area, come out and join us! Information about the Sarasota walk is located HERE.
If you are in the Minnesota/Western Wisconsin area, Eunice Quast & Kate Beverley have also organized a Walk for Saturday, September 16 at Autumn Hills Park in Oak Park Heights, MN. Information about the Oak Park Heights Walk is located HERE.
We invite you to join us in celebrating this great event and if you are interested in hosting a Walk, there is still time. Please reach out to me at Annette Preston at apreston@iwmf.com for more information. In addition, If you set up your own fundraising page, you will be eligible to receive IWMF incentives below:
- Raise $100 and receive IWMF Walk for Waldenstrom’s T-Shirt
- Raise $800 and receive IWMF Walk for Waldenstrom’s T-Shirt and 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, and a redeemable $300 travel certificate for you or a friend to attend a future IWMF Educational Forum
Thank you for helping to make this event a huge success!
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WALK FOR WALDENSTROM'S SPOTLIGHT
Pete & Terri DeNardis
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From Pete DeNardis, IWMF Board Chair:
"Given that the beginning of October is the 20th year that Terri and I (and our family) have been travelling along the WM cancer journey – after having initially been given only 6 years to live – we plan to celebrate the occasion in a special way during the Walk for Waldenstrom’s – we pledge to walk an average of 5K every day during the month of September! During the week, we’ll walk on sidewalks in our community or on local trails, and on weekends we’ll do longer walks along the rivers of downtown Pittsburgh. You’re welcome to join us if you wish – I’ll try to wear my Walk for WM shirt on most days! You can see photos and read about our daily progress on our walk blog HERE!
Please join me, my wife Terri, and my family to help raise awareness and support to find a cure for this currently incurable blood cancer. You can either create your own Walk fundraiser page (contact Donna Cutillo at dcutillo@iwmf.com or 941-927-4963), or contribute towards my family’s Walk for Waldenstrom’s fundraiser. No amount is too small (or too large, for that matter) – all proceeds go towards helping the IWMF fulfill its mission now and in the future. What's most important is that it promotes awareness of WM and helps build a strong sense of community among WM patients, caregivers, and friends in that we're all in it together; raising money to benefit WMers around the world is just icing on the cake!"
Pete was just in his local newspaper this week regarding his walk. You can check it out HERE! In addition, Pete was on his local news channel last night for a segment about his walk, check that out HERE too!
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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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NEXT WEEK!
IWMF Global Educational Webinar
Thursday, September 21st from 12:30 - 1:45PM U.S. ET
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Sharon Bober, Ph.D.
Director, Sexual Health Program
Dana-Farber Cancer Institute
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Join the IWMF Community and Lisa Wise, Vice-Chair of Information & Support, as we learn from Dr. Sharon Bober about an intriuging topic - Everything you wanted to know about Sexual Health & Cancer but were afraid to ask!
WHY DID LISA BOOK THIS SPEAKER?
From Lisa, "To my knowledge, in its 28 year history, the IWMF has never hosted an educational program about sexual health and cancer — it is high time we address this critical topic!
Many of us have had treatment (some multiple times) and I know there must be lots to discuss about sexual health but I’ve never heard a peep about it in my 13 years living with WM!
Having been diagnosed at age 44, I know there is definitely a conversation to be had about how sexual intimacy can potentially change after treatment. Join us as Dr. Bober addresses this sensitive topic so that we can begin an honest and helpful conversation around the world. Dr. Bober says: "Both during and after cancer treatment, you may notice physical and emotional changes in the way you feel about your body and about sex. This is a common reaction to treatments such as chemotherapy, hormone therapy, and surgery. You may also feel uncomfortable talking to your doctor or your partner about these changes.”
So…. let’s talk about the one thing we don’t often talk about…. WM & Sexual Health!"
About the Presenter:
Sharon Bober, PhD, is a Senior Psychologist at the Dana-Farber Cancer Institute and the Founding Director of the multi-disciplinary Sexual Health Program at the Dana-Farber Cancer Institute. She is also an Assistant Professor in the Department of Psychiatry at Harvard Medical School. Dr. Bober’s clinical and research efforts focus on developing effective sexual health interventions for cancer patients and survivors, improving doctor-patient communication about sexual function, and addressing late effects for adult survivors of pediatric cancer.
About the Program:
This event will be held online over Zoom. Once you register, you will receive a confirmation email with the Zoom meeting link. Please contact office@iwmf.com if you have any questions.
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Educate and Empower
September 28th, 2023
1:00 - 2:30PM U.S. Eastern Time
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Join Rami Rones on September 28th to learn about and explore how T'ai Chi and Qi Gong can support those affected by Waldenstrom's.
Expert Bio: Ramel "Rami" Rones has served as a consultant of Mind-Body Therapies at Dana Farber Cancer Institute, Harvard Medical School, Boston Children's Hospital, Mass General Hospital and Tufts Medical Center; he has also co-authored numerous scientific publications
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Lymphoma Research Foundation Webinar:
Update on on Relapsed/Refractory Diffuse Large
B-Cell Lymphoma (DLBCL)
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DATE: Tuesday, September 19, 2023
TIME: 5:00 PM – 6:00 PM U.S. Eastern Time
This is a virtual event, accessible online and over the phone. Access instructions will be provided after registration.
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TODAY! Sound Meditation for WM at 2:00PM US ET | |
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Research studies have shown that sound meditation with singing bowls reduced tension and increased feelings of spiritual well-being in its participants, and could be useful for those experiencing fatigue, chronic stress, depression or anxiety. TODAY, relax to the sound of authentic Himalayan Singing bowls, with gentle verbal guidance to further calm the nervous system.
Join us! Contact Ann MacMullan to be added to the mailing list at anngrace@iwmf.com
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The IWMF is proud to have a volunteer-based telephone and e-mail LIFELINE intended to address specific WM questions from our community members. The LIFELINE is staffed by WM patients and caregivers who are willing to share their experiences in specialized areas. These volunteers do not give medical advice or treatment recommendations. However, LIFELINE volunteers have personal, and often extensive, experience on the topic(s) which they support, and they may be able to assist you in accessing better information or to refer you to experts in specific areas.
Check out the LIFELINE directory HERE.
Are you interested in being a LIFELINE volunteer? Contact office@iwmf.com.
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The Leukemia & Lymphoma Society (LLS):
Nutrition Education Services Center
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Schedule a free one-on-one nutrition consultation with a registered dietitian.
Patients and their caregivers may receive a free one-on-one phone consultation with one of LLS’s registered dietitians who have expertise in oncology nutrition.
Eating well helps people with cancer feel better, stay stronger, and better tolerate the side effects of treatment. Good nutrition also helps the body replace blood cells and healthy tissues that are damaged as a result of cancer treatment.
Click Here To Schedule a Consult
Or call 877-467-1936
Evening appointments are available!
Telephone consultations are available to patients and caregivers in the United States and Canada only. If you live outside the United States or Canada, email Nutrition@LLS.org to connect with a dietitian via email.
What to Expect from a Nutrition Consultation:
Consultations last approximately 30 minutes. By speaking to a registered dietitian, you can learn
- Strategies to improve nutrition and side effects
- Tips for meal planning and grocery shopping
- How to care for a loved one during cancer treatment
- Answers to your nutrition questions
- Questions to ask your healthcare team
- Additional nutrition resources online and in your area
The nutrition consultations are intended for general educational purposes. Due to the nature of the consults, these services are not available
- Recommendations for dietary supplements and herbal preparations
- Prescription diet orders or restrictive diets
- Nutrition therapy by tube or IV
- Free meal delivery
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From Cancer Support Community:
Helpful Recipes for Cancer Side Effects
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From Cancer Support Community:
Cancer treatment can change the way your body processes food. It can also affect how you feel, and even the way food tastes. In addition to taste changes, side effects like fatigue, nausea, diarrhea, constipation, and loss of appetite are common during treatment.
Eating healthy can help you curb these side effects and cope with related eating challenges. A nutritious diet has other benefits too. These include:
- Maintaining a healthy weight
- Lowering the risk of infection
- Improving overall sense of well-being
Click the button below for 7 common side effects during cancer treatment and healthy recipes that can help.
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Marty Vanderlaan and his wife Linda recently visited the Cancer Survivors Park in downtown Greenville, South Carolina. Marty is an IWMF Research Committee member and LIFELINE volunteer. | |
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 info@IWMF.com or visit www.IWMF.com | |
IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | info@iwmf.com | 1-941-927-4963 | | | | |
