The Waldenstrom's Weekly
September 23, 2022
Volume 2, Issue 36
|
|
Because of YOU, the IWMF can provide FREE programming including support, education, and information for all WM community members. |
|
- Walk for Waldenstrom's -
|
|
- Special Announcements -
|
|
The IWMF Board Chair is Sharing his WM Story |
|
Peter DeNardis, IWMF Board Chair, has shared his personal journey with WM over the past 20 years with The Patient Story. Check out Pete's recently published story page HERE!
|
|
Rare Cancer Day is Next Friday, September 30th! |
|
Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition®, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis.
|
|
BIG News for WM Patients in the United Kingdom! |
|
BeiGene announced this week that England’s health technology assessment institute, the National Institute for Health and Care Excellence (NICE), has issued a final appraisal document (FAD) recommending BRUKINSA (zanubrutinib) for the treatment of WM in adults who have had at least one treatment. Read the full press release HERE.
The announcement is good news for the WM community as it means many patients will have access to this effective treatment, which is less invasive than standard treatment and does not require a visit to hospital for treatment.
However, the guidance for England and Wales will restrict access for certain patient groups based on previous treatments or those unsuitable for immunotherapy. Denying WM patients access to this medicine by this decision will be challenging for those not able to receive it.
This guidance will not affect anyone who is already receiving treatment with zanubrutinib that was started in the NHS before this guidance was published.
Jane Nicholson, CEO of WMUK, the UK charity for patients with living with WM, said:
“This announcement is good news for the WM community. It allows some of our patients access to this innovative non-chemo treatment that will improve their quality of life whilst living with WM. However, we and many in the WM community are deeply unhappy that a lot of our patients will be unable to access this treatment.
We’d like to take this opportunity to thank all the patients who offered their experience to demonstrate just how important this life-altering treatment is to people living with WM. We will be working hard to develop evidence on its benefits and to ensure that future NICE appraisals truly recognise the value that new treatments bring.”
**Update regarding zanubrutinib use in Scotland: On September 12, 2022, the Scottish Medicines Consortium committee said it was unable to accept zanubrutinib (Brukinsa) for the treatment of Waldenstrom’s macroglobulinemia, as there was uncertainty around its cost-effectiveness. The SMC said the evidence provided by the company was not strong enough to satisfy the committee that it offers value for money to NHS Scotland. You can read more about their decision HERE.
|
|
Reminder: IWMF Survey Closes in One Week |
|
You’ve got one more week to make your voice heard. The IWMF needs assessment survey is closing on Friday, September 30. If you haven’t already done so, please fill out this survey regarding the organization’s education, information, and support programs; it will only take about 15 - 20 minutes. Your input is invaluable in helping us deliver impactful programs and services.
Thank you for your partnership.
Peter DeNardis, Chair of the IWMF Board of Trustees
Newton Guerin, President & CEO
|
|
MEETING UPDATE
Peripheral Neuropathy Support Group Meeting
|
|
Join the International PN Support Group for presentations and
a Q&A session with Dr. Michelle Mauermann AND
Dr. Narayan Kissoon!
Wednesday, October 12th, 2022
*NEW TIME* 12:45PM - 2:15PM U.S. ET
|
|
|
|
Dr. Michelle Mauermann
Mayo Clinic
Michelle L. Mauermann, M.D., studies disorders that damage the peripheral nerve system through neoplastic (hematologic), inflammatory or genetic mechanisms. She uses human clinical trials in her research. The long-term goals of Dr. Mauermann's research are to elucidate the mechanisms of neuropathies in plasma cell disorders and to improve treatment of hereditary amyloidosis, plasma cell disorders and inflammatory neuropathies.
|
|
|
|
Dr. Narayan Kissoon
Mayo Clinic
Narayan R. Kissoon, M.D., studies the mechanisms of action and clinical outcomes in treatments for headache and chronic pain. This research includes clinical trials investigating the efficacy of minimally invasive percutaneous interventions and the impact of pain treatments on nervous system function. Dr. Kissoon also investigates the abnormal function and structural causes of pain disorders. As part of his research, he reviews the clinical features that predict successful treatment outcomes.
|
|
Registration is Required. You will receive a confirmation email with Zoom meeting details upon registration.
|
|
New Discussion Group Alert!
Extramedullary WM
|
|
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
|
|
TODAY- Sound Meditation for WM
2:00-2:30PM U.S. ET
|
|
Back by Popular Demand!
Relax to the sound of Ann Grace's authentic Himalayan Singing bowls, with gentle verbal guidance to further calm the nervous system. According to sound healing traditions that have been passed down through both lineage and training, these bowls introduce a healing harmonic sound wave that helps dislodge stagnation on the cellular level, bringing the mind and body into perfect tune.
|
|
Recording Available!
Total Body Workout (TBW) with Alix Redmonde
|
|
Join IWMF’s Alix Redmonde in the recording above 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.
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!
MARK YOUR CALENDARS!
The NEXT TBW class will be on October 18th at 1:00PM U.S. ET. Contact [email protected] to get on the list for this offering.
|
|
IWMF Bing-Neel Support Group Meeting
October 9th, 2022
|
|
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]
|
|
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
|
|
Leukemia & Lymphoma Society Webinar:
NEW Research on COVID and Blood Cancer
|
|
From the LLS:
COVID-19 continues to put blood cancer patients at risk, especially as the CDC eases mask and reporting recommendations for the general public. Even with vaccination, breakthrough infections and emerging variants require blood cancer patients and their families to remain vigilant.
LLS continues its work to track the impact of the virus and protect blood cancer patients. Join us as we bring together a panel of experts for an update on what we are learning, including data on infections and reinfections across blood cancer types, the effectiveness of Evusheld in blood cancer patients and the impact of COVID infection in blood cancer patients. You will also hear an update on the latest knowledge emerging from LLS’s analysis of data being gathered in the National Patient Registry.
|
|
Click below to get your IWMF Swag, and be sure to send a picture to [email protected] to be featured in the WM Weekly !
|
|
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
|
|
|
|
|
|
|
