The Waldenstrom's Weekly

April 28, 2023

Volume 3, Issue 14

I connected with the Sarasota office way back in 1997. It's likely one of the best decisions I have ever made- C.S.

-IWMF Educational Forum-

THANK YOU on behalf of the IWMF Home Office Staff for an INCREDIBLE weekend of IWMF Educational Forum programming. We hope that whether you attended in-person or virtually, that you had a meaningful experience of learning, growing, and becoming more empowered regarding your WM Experience! Pictured above, IWMF Home Office Staff (missing Robin Tucker) and joined by Susanne Öhrn on far right, WM-Scandinavia Leader.

A BIG THANKS to our Educational Forum Committee, our 2023 Sponsors, our Speakers, Our Emcees, and all the other wonderful volunteers who helped make this a memorable event!

For now, all of the videos (with the exception of the Friday networking sessions) are currently available on demand within our virtual environment for 2023. We will soon be posting the videos on our YouTube Page and website.

• If you have not previously registered, you will need to do so HERE in order to watch the videos.
• If you are already registered, you can log in HERE to watch the videos using your email address.
• Once you've logged in, click on the orange button that says "Watch Presentations in Our Theater"



Don't forget to complete the surveys! Every year, survey data is collected and put into reports for the IWMF Board, IWMF Ed Forum Committee, and to our speakers with YOUR feedback. If you want to help make improvements to future Ed Forums, please take the time to respond.

The Overall Ed Forum Survey is HERE!

All other surveys are available in the virtual environment or you can check out the QR codes here on your screen.

Dr. Jonas Paludo Handouts for Current Treatment Options & New Therapies on the Horizon. We did not have these available for in-person attendees, but they are now available HERE.

Ed Forum Photo Album/Video- You can view photos from the 2023 Educational Forum at: https://bit.ly/2023edforum

We also had a slide show play during the welcome reception with photos submitted by our community members. You can check that out HERE.

Missed Connection? Did you meet someone at the Ed Forum and you forgot to get their contact information? Contact Shelly who can try and get you connected! [email protected]

- Research -

The U.S. FDA Authorizes Second

Bivalent Booster for COVID-19

From The United States Food and Drug Administration (FDA)

"Most individuals with certain kinds of immunocompromise who have received a bivalent COVID-19 vaccine may receive a single additional dose of a bivalent COVID-19 vaccine at least 2 months following a dose of a bivalent COVID-19 vaccine, and additional doses may be administered at the discretion of, and at intervals determined by, their healthcare provider. However, for immunocompromised individuals 6 months through 4 years of age, eligibility for additional doses will depend on the vaccine previously received."

To read the full press release, click here.

DID YOU KNOW? Dr. Andrew Branagan (Mass General Hospital) JUST gave a presentation to us last weekend at the IWMF Ed Forum, called Infection Prevention and the IVIG, COVID Balancing Act. Be sure to check it out! Information on how to access Ed Forum videos on-demand are in the first article above!

International Young WM Support Group Meeting

Monday, May 15th at 7:30PM U.S. Eastern Time

The International Young WM Support Group will be having a meeting for patients and caregivers under the age of 50. Attendees will join Co-Leaders Ryan and Deborah on Zoom for a caring and sharing session, which will last approximately one hour.

Monday, May 15th, 2023

7:30PM - 8:30PM U.S. ET

To join the mailing list for this group, contact Shelly at [email protected].

Cardio Flow- TODAY at 2PM U.S. ET with Ann

& Recording Available! Sound Meditation for WM

Cardio Flow - 45 minutes of Mindful Movement

Physical activity is the number one intervention for cancer-related fatigue. This medium-paced class will feature cardio, strength, and balance training to safely get the heart rate up for those managing WM. Come as you are and have a little fun while you’re at it!

Ann MacMullan, E-RYT 500, C-IAYT, is our WM Community Yoga Instructor. She enjoys uplifting the WM community through breath-connected movement, mindfulness, and by creating a supportive group environment on Zoom. Her father was diagnosed with WM in 2019.

To join the mailing list for this program, contact Shelly at [email protected] 

Recording Available! Relax to the sound of Ann'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. Listen in HERE.

Online Portal Update for LLS

Patient Financial Assistance Programs

The Leukemia & Lymphoma Society (LLS) is pleased to announce the launch of its new online portal for all financial assistance programs, coming late May 2023. 

The new portal provides a one-stop-shop where users can access the Co-Pay Assistance Program and other financial assistance programs in one place. 

What’s new in the portal?

• Applicants who complete a few pre-screening questions will see a list of open financial assistance programs they may qualify for. 
• Contact information for those who have already submitted an application will be saved. When a new application is initiated, the saved contact information will prepopulate for a more convenient user experience.

Questions?

• Email: [email protected]
• Toll Free Phone: (877) 557-2672

WM Community Corner

Lisa Wise, IWMF Vice-Chair of Information & Support, visited the Walden Pond in Concord, Massachusetts wearing her IWMF sweatshirt! Where are you wearing your IWMF swag? Purchase your own HERE!

Waldenstrom India Launches New Website

Waldenstrom India is proud to announce their newly updated website. Rajini and Saurabh Seroo started Waldenstrom India in 2017, after navigating their own journey with WM since 2009. Thank you Rajini and Saurabh for supporting the WM community in India! Check out their site Here.

- Education -

Lymphoma Research Foundation DC Workshop

WM Breakout with Dr. Edward Stadtmauer - UPENN

Waldenström France to Hold June Meeting in Paris

On June 10, 2023, Waldenström France will meet in Paris for a Patient-Doctor meeting. They will have speakers presenting on the topics of WM and peripheral neuropathy. You may register Here. Please note that the meeting will be conducted in French.