The Waldenstrom's Weekly

August 25, 2023

Volume 3, Issue 31

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 -

The IWMF Announces NEW Wellness Program Coordinator, Ann MacMullan!

Ann MacMullan contacted us almost three years ago, offering to donate her time as a certified yoga instructor in honor of her father who has WM. Since 2021, Ann has collaborated with the IWMF to grow the WM Wellness Community, featuring a range of group classes on Zoom to address common side effects of WM and WM treatments. She has also taught at our Ed Forum, written articles for the IWMF Torch, and become certified as a Yoga Therapist. Her clinical yoga therapy practicum focused on yoga therapy and sound therapy as an intervention for Waldenstrom’s.

A few months ago, we reached out to our community with a wellness survey, and there was a resounding “YES” from 95% of respondents to expand wellness programming. As a result, we are delighted to introduce Ann as our new IWMF Wellness Program Coordinator. Ann brings a creative skill set which includes her experience as a community yoga instructor since 2015, wellness business owner, and Emmy-award winning television producer. She is thrilled to help create a safe and compassionate space where health and wellness are valued. Ann is also a certified Breath Coach, Yoga for Osteoporosis teacher, and trained in the foundations of Ayurveda and Sound Healing.

Ann will be helping continue the IWMF mission to support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) to improve patient outcomes, while advancing the search for a cure. She can be reached directly at [email protected].

WALK FOR WALDENSTROM'S SPOTLIGHT

Don & Mary Brown: Chicago Area/SE Wisconsin

Don and Mary Brown will lead a Walk for Waldenstrom’s in Fullersburg Woods Nature Education Center in Oak Brook, IL on September 30, 2023 at 9:00 to 10:30 a.m.

From Don:

We will meet at 3609 Spring Rd., Oak Brook 60523, and the about 2-mile walk will start promptly at 9:15 a.m. Mary is a long-time nature photographer and will guide us through the beautiful and wonder of this hidden treasure in the western suburbs of Chicago. She specializes in birds for which there are many including Eagles and Hawks but the Herons are her specialty. Also, we plan to stop for a group picture at the Historic Old Graue Mill located nearby on York Road. Water and Walk for WM T-Shirts will be available the morning of the walk. Respond to me at [email protected] with the names of those in your walking group, your home town and email address so we have an idea of the number of in-person walkers and can contact you if anything changes – otherwise just show up with walking shoes. The trails are flat and easy and we will be slow and easy.

Thanks for your support!

From Annette Preston, IWMF Director, Donor Engagement

We are thrilled to report that we have EIGHT organized Walks scheduled throughout the month of September!

1. Marla Chao, Julianne Flora Tostado & LA/OC, CA Support Groups
2. Karen Fiorello & Lata Israni – Mission Bay, CA
3. Eunice Quast, Kate Beverley, Susan Hamblin & the Minnesota/W. Wisconsin Support Group
4. Shelly Postek, Sharon Piotrowski & The Sarasota, FL Area Support Group
5. Lisa Wise, Andrea Bensusan & The E. PA/S. NJ (Philly) Support Group 
6.  Paul Kitchen, Rothesay, New Brunswick, Canada
7. Don & Mary Brown – Chicago Area and SE Wisconsin Support Group
8. Beth Mitchell & Hannah Syed- London, UK

The annual Walk for Waldenstrom’s fundraiser will be taking place across the globe throughout the month of September.  Please join us in raising WM awareness and support for the IWMF.

If you would like more information on arranging an in-person walk in your community, or if you need assistance setting up a Mightycause fundraising page to share on social media, please reach out to me at [email protected] or 317-919-8238.

Thank you all for your support with this important IWMF initiative!

Annette Preston, CFRE, CFRM

IWMF Director, Donor Engagement

WMUK Wheels for Waldenstrom's Off to the Races!

The WMUK Wheels for Waldenstrom's has begun! This is a fundraising event to raise funds for WMUK, the only UK charity for WM. WM patients and their consultants are riding side by side for about 250 miles from London, UK to Paris, France throughout the weekend. The group set off this morning from Crystal Palace in London in high spirits with supporters cheering them on. Our very own Beth Mitchell, IWMF Manager, Affiliate & Global Partner Engagement, is participating in the event with her brother, Sam.

Pictured above from left to right are Beth, Dr. Shirley D'Sa (WM consultant), Bob Perry (IWMF International Affiliate Leader for Ireland), and Sam. Dr. D'Sa participated in our 2023 IWMF Ed Forum earlier this year, including our popular Ask the Doctors session!

Good luck to ALL riders!

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 -

Educate and Empower: Living Well with WM

A brand new monthly wellness gathering

Whether you’re interested in managing fatigue, stress, peripheral neuropathy, immune system function, balance or bone loss; or you’d like to try a new approach like Yoga, Massage, or T’ai Chi; our 90-min livestreamed gatherings are tailored to meet you where you are, and provide you with new tools to live well with WM. We’ll also learn easy recipes, create art, and connect with others that share this rare diagnosis!

Hosted by Wellness Program Coordinator Ann MacMullan, our monthly Zoom gatherings will feature notable wellness experts whose mission is to share their knowledge and know-how towards better patient outcomes. Come ready to learn, do, ask questions, and share with the WM community. Recordings will be made available on IWMF YouTube channel shortly after our live session.

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

TODAY at 2PM U.S. ET - Cardio Flow for WM

 Contact [email protected] for the Zoom Link!

International Young WM Support Group Meeting

Tuesday, September 12th at 8:30PM U.S. ET

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

Tuesday, September 12th, 2023

8:00PM - 9:00PM U.S. ET

To join the mailing list for this group, contact Michelle:  [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