The Waldenstrom's Weekly

August 18, 2023

Volume 3, Issue 30

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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-Special Announcements -

WALK FOR WALDENSTROM'S SPOTLIGHT

Minnesota & W. Wisconsin

Eunice Quast (Pictured above, co-leader), Kate Beverley, and the Minnesota & W. Wisconsin Support Group will be hosting a Walk for Waldenstrom's followed by a picnic on Saturday, September 16th. The event will take place at Autumn Hills Park in Oak Park Heights, MN. From the Support Group Leaders: "Feel free to just show up at 10:30am to walk prior to the picnic, or sit in the shade and cheer us on! As always, family and friends are welcome to join us. We are so excited to see you in person." If you would like to attend, please RSVP to Eunice at [email protected] by August 31st in order to reserve a lunch.

From Annette Preston, IWMF Director, Donor Engagement


The annual Walk for Waldenstrom’s fundraiser will be taking place across the globe throughout the month of September.  Please join us in raising WM awareness and support for the IWMF.


If you would like more information on arranging an in-person walk in your community, or if you need assistance setting up a Mightycause fundraising page to share on social media, please reach out to me at [email protected] or 317-919-8238.


Thank you all for your support with this important IWMF initiative!


Annette Preston, CFRE, CFRM

IWMF Director, Donor Engagement

The IWMF Announces an Addition to the WM Physicians Directory in the U.S.




Dr. Georgios Pongas


University of Miami


Sylvester Comprehensive Cancer Center


Miami, Florida



For your convenience in seeking a consultation for a second opinion, we provide a directory of well-known cancer centers we work with and physicians/researchers who are very knowledgeable about WM. All the physicians included in our Physicians Directory have agreed to be included in the directory for consultations.

There is Still Time to Register!

 European Patient Forum on 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!


- Education -

IWMF Global Educational Webinar

Thursday, September 21st from 12:30 - 1:45PM U.S. ET

Everything you wanted to know about Sexual Health & Cancer but were afraid to ask!




Sharon Bober, Ph.D.


Director, Sexual Health Program


Dana-Farber Cancer Institute

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!


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 [email protected] if you have any questions.

Register Here
- Support -

Sound Meditation for WM

TODAY at 2:00PM U.S. Eastern Time

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. Contact [email protected] for the Zoom Link!

The Patient Access Network (PAN) Foundation:

WM Fund STILL OPEN for Eligible U.S. Patients!

The PAN Foundation is helping patients afford their out-of-pocket costs with annual grants of $7,000.

 

We know it can be difficult to afford the out-of-pocket costs of treatment for WM. If you’re looking for more financial assistance resources to help with your out-of- pocket treatment costs, we encourage you to learn more about our friends at the PAN Foundation.

 

The Patient Access Network (PAN) Foundation is a national organization that helps underinsured patients with life-threatening, chronic, and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs. You can find more information about their WM fund below.

 

About PAN’s WM fund

 

PAN’s WM patient assistance fund provides $7,000 per year in

financial assistance to pay for the deductibles, co-pays, and coinsurance costs associated with WM treatment. To qualify for funding, patients living with WM must meet the following eligibility

requirements:

 

  • Be getting treatment for WM.
  • Reside and receive treatment in the U.S. or U.S. territories
  • Be prescribed a medication or product that is listed on PAN’s list of covered medications
  • Have an income that falls at or below 500% of the Federal Poverty Level.
  • Have Medicare health insurance that covers the qualifying medication or product.

 

Review the full eligibility criteria HERE and check if you qualify.

 

How to apply

 

It’s easy to apply and you’ll learn if you’re approved for a grant immediately. Visit PAN’s online patient portal to get started and check out their portal how-to guides for step-by-step instructions on common tasks like creating an account and applying for assistance. You can also reach PAN by phone at 1-866-316-7263, Monday through Friday, 9 a.m. to 7 p.m. Eastern Time.

The information about this clinical trial is intended to be helpful and educational, but it does not constitute an endorsement by the IWMF and is not meant to be a substitute for professional medical advice. The IWMF strongly encourages discussions with their health care professionals about specific medical conditions, side effects, and treatments.  

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

IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | [email protected] | 1-941-927-4963
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