|
The Waldenstrom's Weekly
February 23, 2024
Volume 4, Issue 8
| |
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. | |
IWMF Mourns Death of Board Member, Glenn Cantor | |
|
We are deeply saddened to announce the passing of Board Member and long-time volunteer, Glenn Cantor. Glenn passed away unexpectedly due to an accident while on vacation.
Peter DeNardis, Chair of the IWMF Board of Trustees, said, “The IWMF community is deeply saddened by his passing. Glenn was a tireless volunteer, freely giving his expertise and time to further advance WM-specific research, and to provide guidance and advice to others dealing with Waldenstrom’s macroglobulinemia.” Glenn had served as an active Board Member since 2020 and was a key member of the IWMF’s Scientific Advisory Committee and Research Committee.
His keen insight and probing questions always led to great discussions at Ed Forums, Board Meetings, and Research Committee meetings, and served to further advance the outlook for WM research. His presence will be sorely missed by all, patients, caregivers, researchers, and clinicians alike. His intellect, humor, and insight were unparalleled.
The IWMF extends their heartfelt sympathies to his wife and family. May they take comfort in the knowledge that Glenn had a tremendous impact on everyone he encountered while on his WM journey and mission of helping others, whether in person or virtually around the world.
His family has suggested that donations can be made in his memory to a couple of his greatest passions: he valued the work of the International Waldenstrom’s Macroglobulinemia Foundation and the St Baldrick’s Foundation .
| |
|
Rare Disease Day is an internationally recognized day and initiative to raise awareness, generate support, and advocate for care and treatments for the 300 million people globally, including 1 in 10 Americans who are living with a rare disease. It takes place annually on the last day of February, which this year is February 29 – the rarest day of the year!
The zebra is the official mascot for rare disease patients. Historically, medical professionals were told that when they “hear hoofbeats,” they should not expect to see a zebra. In other words, look for the more common answer, a horse. Today, we know that 1 in 10 Americans is a zebra! It’s not always obvious to recognize or diagnose a person with a rare disease (a zebra). As a result, this can cause a delay in care and often negatively impacts a person’s quality of life or life expectancy.
Wearing stripes can start a conversation about Waldenstrom's macroglobulinemia that helps others learn about the prevalence and challenges of rare diseases.
| |
|
With nearly 3 million active monthly users, Facebook is a great place to raise money and awareness for causes like the IWMF.
Creating a Facebook fundraiser is an easy way to raise money for the IWMF because the setup is simple and cost-effective. In addition to its accessibility, the Facebook platform’s larger user base means your campaign has the potential to reach a wider audience. Users can easily share their fundraiser with their network of followers, who can then donate and share with their network, and so on.
Setting up a Facebook fundraiser to celebrate your birthday or anniversary, or to honor someone else, is easy, and we have created a NEW step-by-step guide on our website HERE to guide you through the Facebook fundraiser set-up process.
If you need additional information about setting up a Facebook fundraiser, please do not hesitate to reach out to me at apreston@iwmf.com or 317-919-8238.
Thank you and happy fundraising,
Annette Preston, CFRE, CFRM
Director, Donor Engagement
| |
|
Don't miss your chance to join us!
With a packed agenda featuring WM experts from around the world, this conference promises to be a valuable opportunity for learning and networking. Whether you are recently diagnosed or have been living with WM for a while, or if you are a caregiver, this forum offers a wealth of knowledge and connections to enhance your understanding and expand your community.
Register now for the in-person experience by visiting our official website HERE.
In addition to this year's in-person experience, we are excited to announce a virtual opportunity as well. No matter where you are located, you can participate and benefit from the event. Use this link to register for the virtual experience.
If you have any questions or need further assistance, please feel free to reach out to our dedicated team. We look forward to welcoming you to the 2024 Educational Forum and creating an enriching experience for all participants.
| |
|
Educate and Empower Webinar
NEXT Thursday, February 29th at 1:00PM U.S. ET
| |
|
Dem Bones: Have you signed up yet? Find out which yoga poses have been proven to strengthen bone, while learning about the science behind improving bone quality. Take control of your bone health by practicing researched yoga poses with consistency, proper alignment, and eagerness. Total beginners welcome; participants will be guided through versions of poses according to their abilities and what is safe.
Bio: Ann Grace MacMullan, E-RYT 500, C-IAYT, is a certified yoga therapist who specializes in tailoring the practice of yoga to a wide range of practitioners, and especially enjoys providing tools to support the aging process. She is certified to teach Yoga for Osteoporosis through Dr. Loren Fishman, and was featured in the New York Times article You’re Never Too Old for Yoga.
Register in advance for this meeting below!
| |
|
Triage Cancer Webinar
February 27th at 1:00PM U.S. ET
| |
|
Join Triage Cancer for a FREE webinar on 2/27 about practical steps to manage medical bills and find financial help.
Triage Cancer will be joined by Dollar For to learn about charity care and how you can qualify for financial help from your hospital, negotiate your bills, and set up payment plans.
| |
|
Watch & Wait/MGUS Support Group Session
Sunday, March 3rd at 2:00PM Eastern Time
| |
|
Registration Open!
We invite you to mark your calendars for the inaugural meeting of the new IWMF Specialty Support Group, designed especially for those navigating the watch and wait stage of WM (Waldenström’s Macroglobulinemia) and MGUS (monoclonal gammopathy
of undetermined significance). Whether you are currently asymptomatic or have been managing symptoms often associated with early stages of WM and MGUS progression (such as anemia and fatigue), this gathering presents a unique opportunity to connect with individuals who, like you, are seeking support and guidance on “what comes next” and how to effectively manage this new chapter in your life.
We are therefore excited to announce that registration is open for our very first virtual meeting of this new support group, which will take place via Zoom on Sunday, March 3, 2024, from 2:00
PM to 3:30 PM ET.
| |
Recording Available- Sound Meditation for WM | |
|
"My wife and I just experienced your February sound meditation. It was simply, immersively, wonderful."
Relax to the sound of authentic, Himalayan singing bowls, with gentle verbal guidance and healing chants to further calm the nervous system. Reach out to anngrace@iwmf.com to receive our
Zoom invite and follow-up recordings.
| |
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 | | | | |
