The Waldenstrom's Weekly

September 8, 2023

Volume 3, Issue 33

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.

-Advocacy -

Steven Hadfield Visits U.S. White House to Speak on the Expansion of Medicare Drug Cost Controls

On August 29th, Steven Hadfield of North Carolina flew to the White House to speak on television about the expansion of Medicare drug cost controls. The Biden Administration announced 10 medications that are eligible for Medicare drug price negotiation, and Imbruvica is one of the chosen medications. Steven also was featured on the White House Instagram page, featuring a personal conversation between him and Joe Biden Here.

From Steven, "I will continue to advocate for Waldenstrom's Macroglobulinemia!"

Medicare & Medicaid Listening Session for IMBRUVICA: November 6th

On November 6th at 12:00PM - 1:30PM U.S. ET, The Centers for Medicare & Medicaid Services (CMS) will host a patient-focused Listening Sessions regarding Imbruvica as part of the Medicare Drug Price Negotiation Program. 

The virtual public Listening Sessions will provide an opportunity for patients, beneficiaries, caregivers, consumer and patient organizations, and other interested parties to share input relevant to drugs selected for the first round of negotiations.

The schedule for all of the listening sessions can be found here and you can register to make a public comment at the listening session for Imbruvica here.

-Walk for Waldenstrom's -

From Annette Preston, IWMF Director, Donor Engagement:

YOU have helped raise almost $38,000 for the Walk for WM so far, Incredible! Please join us this September to help raise awareness and support of WM and the IWMF through our Walk for Waldenstrom’s. We have coordinated our Walks throughout September to coincide with Blood Cancer Awareness month. I will be joining the Walk for WM in San Diego, California on Sunday the 10th, which has been organized by Karen Fiorello and Lata Israni. If you live in the San Diego area, come out and join us! Information about the San Diego walk is located HERE.

We invite you to join us in celebrating this great event and if you are interested in hosting a Walk, there is still time. Please reach out to me at Annette Preston at [email protected] for more information. In addition, If you set up your own fundraising page, you will be eligible to receive prizes below:

• Raise $100 and receive IWMF Walk for Waldenstrom’s T-Shirt
• Raise $800 and receive IWMF Walk for Waldenstrom’s T-Shirt and complimentary registration to a future IWMF Educational Forum
• Raise $2,000 and receive IWMF Walk for Waldenstrom’s T-Shirt, complimentary registration to a future IWMF Educational Forum, and a redeemable $300 travel certificate for you or a friend to attend a future IWMF Educational Forum

Thank you for helping to make this event a huge success!

WALK FOR WALDENSTROM'S SPOTLIGHTS

ROBIN TUCKER & IWMF UK TEAM

Robin Tucker, IWMF Finance Manager, has set out to walk 200 miles throughout the months of August and September. She has already walked nearly 150 miles and raised $550, great job Robin!

Last weekend, Beth Mitchell & Hannah Syed, (IWMF Managers, Affiliate & Global Partner Engagement) organized a 5 mile Walk for WM in London, UK. The team walked from Trafalgar Square to Tower Bridge. Thanks to all who participated!

-European Patient Forum-

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

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.

Educate and Empower

September 28th, 2023

1:00 - 2:30PM U.S. Eastern Time

Join Rami Rones on September 28th to learn about and explore how T'ai Chi and Qi Gong can support those affected by Waldenstrom's.

Expert Bio: Ramel "Rami" Rones has served as a consultant of Mind-Body Therapies at Dana Farber Cancer Institute, Harvard Medical School, Boston Children's Hospital, Mass General Hospital and Tufts Medical Center; he has also co-authored numerous scientific publications

TOMORROW!

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

Dr. Ranjana Advani

Stanford University Medical Center

Stanford , CA

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.

Join us today! Contact Ann MacMullan to be added to the mailing list at [email protected]

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