The Waldenstrom's Weekly
March 3, 2023
Volume 3, Issue 8
IWMF is dedicated to supporting and educating everyone affected by WM to improve patient outcomes while advancing the search for a cure.
- Special Announcements -
The IWMF Welcomes New Staff Member
The IWMF is happy to announce that Annette Preston, CFRE, CFRM has joined our Home Office Staff team as Director, Donor Engagement. Annette comes to us with over thirteen years of experience in all aspects of fundraising, including special events and traditional donor development.

In her new role, Annette will lead all IWMF fundraising efforts and will implement relationship enhancement strategies and practices with donors at all giving levels. She will have responsibility for leading our Development Team’s efforts to expand participation in our Ben Rude Heritage Society. She will oversee our WALK for Waldenstrom’s campaign along with expanding individual peer to peer fund raising activities, develop and implement a plan to encourage more “in honor of” gifts and plan/implement strategies to enhance our direct mail campaigns. With each of these resource development strategies, she will continue our strong commitment to good stewardship of our donor dollars.

You can reach Annette at [email protected].
IWMF Board of Trustees Meet
to Discuss Important 2023 IWMF Initiatives
On February 26th, members of the IWMF Board of Trustees and Home Office Staff met in person and over Zoom on behalf of the WM community. Throughout the day, the group shared progress on key initiatives to support the mission of the IWMF in 2023. Stay tuned for many exciting announcements!

Thank you to our volunteer IWMF Board of Trustees. We are grateful for ALL you do to help the WM community around the world!
- Education -
The 28th Annual IWMF Educational Forum will be a unique experience to learn from medical experts and WM community members 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.

We hope you will join us!
IWMF and Patient Access Network (PAN) Webinar
March 28th, from 4:00PM - 5:00PM U.S. ET
Medicare Reforms Passed Through the
Inflation Reduction Act


Amy Niles
Chief Advocacy and Engagement Officer

PAN Foundation
Join our webinar on March 28th to learn about the Medicare reforms that were passed in August 2022 as part of the Inflation Reduction Act. These reforms have the potential to significantly lower out-of-pocket costs for prescription medications for individuals on Medicare. 

Bonnie Beckett, IWMF Public Policy Liaison, will help to get YOUR questions answered during the Q&A portion of the program. Please submit your questions in advance when you register below.

- Support -
WM Veteran Support Group
March 16th, 2023 at 2:00PM U.S. ET
The IWMF is proud to be hosting a special discussion group for WM community members who are Veterans. 

On March 16th from 2-3 pm ET, topics for discussion will include: sharing experiences; navigating the Veterans Administration and more.

The meeting will be hosted by Ray Vance, IWMF Lifeline Volunteer and Vietnam Veteran.

For any questions, please contact Michelle Postek at [email protected].

Please register at the button below for the meeting. Once you register, you will receive a confirmation email in your inbox with the Zoom link.
International Bing-Neel Support Group Meetings
TWO Opportunities to Connect on April 2nd, 2023
There will be two meetings of the IWMF Bing-Neel Support group on April 2. Bing-Neel Syndrome is a very rare complication of WM/LPL in which the cancer/WM cells infiltrate the brain and/or spinal fluid. There will be two meetings so that we can accommodate many time zones. Dr. Shayna Sarosiek from the Bing Center For WM at the Dana Farber Cancer Institute in Boston, will pre-record a special presentation. Questions for the doctor were collected in a recent survey of members of the Bing-Neel Support group. Dr. Sarosiek will do her best to incorporate those into her presentation.

You will need to pre-register for a meeting by using either of the two blue links below:
Meeting #1 will be held on April 2, at 1pm Eastern Daylight Time US - (UTC/GMT-5)
Meeting #2 will be held on April 2, at 6pm Eastern Daylight Time US - (UTC/GMT-5)

Questions? Contact one of the following:
Stuart Quick - BN IWMF Lifeline Volunteer [email protected] - London, England
Julie Davidson - BN IWMF Lifeline Volunteer [email protected] - Tucson, AZ, USA 
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