The Waldenstrom's Weekly
April 7, 2023
Volume 3, Issue 12
The sun never sets on WM research, education and support.
The theme for the World Health Organization's observance of World Health Day for 2023 is "Health For All". Join the WHO and the IWMF on a journey to achieve Health for All! #HealthForAll #WHO75 #IWMF2023EDFORUM
- IWMF Educational Forum -
TWO WEEKS AWAY, There's Still Time to Register!
We are TWO WEEKS away from our Educational Forum! There is still time to book your flight to come meet WM community members and physicians from around the world!

Although you can attend virtually, the Ed Forum is a unique opportunity to meet, IN PERSON, world-renowned WM clinicians and researchers and spend time with fellow patients and caregivers who are also experiencing the WM journey.

For those attending in-person, be sure to peruse the fabulous St. Louis Gateway Guide, which was created by our incredible Ed Forum Committee volunteers!

Please Note: Advance verification of COVID-19 vaccination will be required for all in-person attendees for their own safety, as well as the safety of others. In-person registered attendees will receive additional details on Ed Forum health and safety protocols. Be sure to consult with your healthcare team when deciding to attend physically. Your health is our priority. Masking is strongly recommended (but not required) for in-person attendees.
- Education -
Recording Available!
Update on Bing-Neel Syndrome
From Bing-Neel Co-Leader & Lifeline Volunteer, Julie Davidson:
"The Bing-Neel Support Group just had our Spring meeting. We featured a wonderfully informative video by Dr. Shayna Sarosiek, senior physician at the Dana-Farber Cancer Institute’s Bing Center for Waldenstrom’s Macroglobulinemia.

To be included on the group mailing list, or just to talk to someone about Bing-Neel Syndrome, contact Julie Davidson, IWMF Lifeline Volunteer for Bing-Neel at [email protected]. We look forward to hearing from you!”

- Support -
IWMF Second Opinion Financial Assistance Program in Partnership with NORD
A week and a half ago, the IWMF launched our first financial assistance program in partnership with The National Organization for Rare Disorders (NORD).

The IWMF Travel & Lodging (T&L) Assistance Program provides individuals diagnosed with WM, or those being evaluated for the disease, with financial assistance related to second opinion or diagnosis confirmation appointments up to the program's established financial limit. With WM being a rare disease, having a second opinion with a WM specialist can be critical to confirm diagnosis and course of treatment. Community members inside AND outside of the U.S. may qualify.
 
 
 
 
For further information or to apply for this new program, contact NORD M-F between 8:30am - 6:00PM EDT:
203.308.5902
 
 
Please note that funding is limited. If you would like to contribute to the IWMF and our T&L Fund, please contact Annette Preston, IWMF Director of Donor Engagement, at [email protected] . This is a special opportunity to help other WM patients!
The Patient Access Network (PAN) Foundation:
WM Fund 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.
U.S. Citizens: Donating Your IRA Required Minimum Distribution
Every year, U.S. Citizens age 70 ½ and older face a dilemma; what to do with the required minimum distribution (RMD) from their traditional individual retirement account (IRA).

One option is to make a qualified charitable distribution (QCD). Did you know you can contribute up to $100,000 directly to a qualified 501(c)(3) public charity without counting the distribution as taxable income? This means you may receive a tax benefit from your charitable contribution even if you do not itemize your deductions. In some cases, the tax savings for donors can be substantial. Tax benefits aside, earmarking this income for charity is a great way to begin or expand your giving portfolio to support the causes you care about.

If you would like to learn more about how to make a qualified charitable distribution to the IWMF, please contact Annette Preston at [email protected], or 317-919-8238.
To sign up for classes, contact Shelly at [email protected] and please specify which class(es) you would like to be added to.
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.  
IWMF is dedicated to supporting and educating everyone affected by WM to improve patient outcomes 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