The Waldenstrom's Weekly

September 1, 2023

Volume 3, Issue 32

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.

-Special Announcements -

IMPORTANT MESSAGE FROM IWMF LEADERSHIP

We are turning to our worldwide WM community to request assistance identifying skilled volunteers. 

The IWMF is currently seeking individuals with accounting/financial expertise. 

Do you know anyone with that professional background? Please forward all suggestions to Newton Guerin at: [email protected]. 

Thank you for your support of the IWMF!

Pete DeNardis, IWMF Chair and Newton Guerin, IWMF CEO

Walk for Waldenstrom's With Us

Throughout the Month of September!

From Annette Preston, IWMF Director, Donor Engagement:

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.

In this issue of the Waldenstrom’s Weekly, you will find two highlighted Walks – on in Pennsylvania (US) and one in Canada. You can also visit our website at www.IWMF.com to see information about six other Walks that will be occurring during September throughout the US and in the UK. 

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 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 SPOTLIGHT

Lisa Wise & Ann MacMullan:

E. Pennsylvania & S. New Jersey Spotlight

Lisa Wise and Ann Grace MacMullan will lead a Walk for Waldenstrom’s on Sunday, September 10th, 2023 from 2:00 - 4:00 pm at Stoneleigh Natural Garden at 1829 East County Line Road in Villanova, PA 19085. Enjoy gentle stretching before our walk with Ann Grace MacMullan, IWMF Wellness Program Coordinator! Join us - it will be a lovely way to support the IWMF!

Click HERE to RSVP!

From Lisa: 

Can’t wait to see you all at the Philly Stretch & Walk for WM! We'll gather to enjoy some gentle stretching before our lovely, flat stroll through a picturesque setting…. Stoneleigh features one-mile of porous-paved walking paths, free parking and admission, restrooms, a picnic pavilion, water fountain & more! The paths are accessible for people of all abilities and benches in the shade dot the path.

2:00 pm - Gather & Greet at the main entrance (next to parking lot)

2:15-2:30 pm - Yoga & Stretching with Ann Grace, Certified Yoga Therapist & IWMF Wellness Program Coordinator

2:30-3:00 pm - Walk together on a gentle, flat, easy, one-mile walking path (or sit comfortably in the shade and cheer us on!)

3:00-4:00 pm - Enjoy light snacks, beverages, shmoozing and a GROUP PHOTO before heading home. Consider bringing a water bottle, hat, sunscreen, comfy walking shoes, and a lawn/camp chair if needed. Click HERE to learn more about Stoneleigh - sorry, no pets allowed on their grounds. 

Please RSVP & Donate TODAY!

Questions? Email Lisa at: [email protected].

Thanks for your support!

Follow Paul Kitchen's Walk for Waldenstrom's!

Paul Kitchen, IWMF Board Member, is walking as far as he can each day ALL of September. He is hoping to average between 5 and 6 miles a day walking a distance equivalent to travelling from his home in Rothesay, New Brunswick, Canada to Calais, Maine in the USA. This journey will be about 150 – 160 miles! Paul will be tracking his progress with a map tracker, and you can read his story and follow along HERE! Paul was also interviewed by his local newspaper HERE in August. Good luck, Paul!

IWMF Announces 2024 Cruise!

We are happy to announce the IWMF 2024 Post Ed Forum - Alaska Cruise to be held in conjunction with next year’s Ed Forum in Renton, Washington. We have made arrangements with Royal Caribbean International for an eight day/seven night Alaska Cruise aboard the Quantum of the Seas. The cruise ship will depart from Seattle, Washington at 4:00pm, on Monday, May 6,  2024 (the day following the 2024 Ed Forum closing) and will return to Seattle on Monday, May 13, 2024.

For Details and to SAVE YOUR SPOT, CLICK HERE!

Come Join Us!

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

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: Living Well with WM

Join Rami Rones to learn about and explore how T'ai Chi and Qi Gong can support those affected by Waldenstrom's. Qigong and T'ai Chi provide mind-body tools that empower patients to improve and actively contribute to their health care and treatment. Together, these powerful eastern philosophies complement a western approach to dealing with chronic conditions by offering mind-body techniques for a complete approach to health, prevention, and healing. Slow, low-impact movements increase muscle mass and bone density, ease aches and pains, gently stretch your muscles, improve balance, prevent falls and can be done sitting, standing, or lying down.

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

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.

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