The Waldenstrom's Weekly

July 14, 2023

Volume 3, Issue 25

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.

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-Special Announcements -

Join the IWMF and WMUK for the First Ever 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!

Walk for Waldenstrom’s in September 2023!

Tips and Suggestions Based on Paul Kitchen’s Annual International Walk for WM

Plan now to participate in the IWMF’s Walk for Waldenstrom’s in September 2023!

There are two purposes for this walk. One is to raise awareness of our very rare form of lymphoma, Waldenstrom’s Macroglobulinemia, and the second is to raise funds to allow the IWMF to continue funding leading edge research, and to provide education and support to patients and caregivers around the world.

Paul Kitchen, IWMF Board Member, has some tips and suggestions based on his past and current efforts in the Walk for WM:

"I am volunteering to walk as far as I can each day for 30 days of September. I am hoping to average between 5 and 6 miles a day walking a distance that would be equivalent to travelling from my home in Rothesay, New Brunswick, Canada to Calais, Maine in the USA. This journey will be about 150 - 160 miles. Each day there will be an update of my progress posted on the IWMF website. There will also be a blog informing you how the walk went that day.

In 2021 I undertook a similar walk and had a number of WMers join me. If we could have a few other WMers try to walk, cycle, swim, use an elliptical or treadmill in September, they might well get support from their contacts for their “walk.” We understand that many WMers are in different stages of their disease journey and may not be able to take on a physical activity for the walk. Even so, you can still participate by doing something that you enjoy and taking it on as a challenge of sorts – baking cookies, reading books, lawn bowling, or whatever suits your fancy and can engage your family, friends, and local community members to pledge to donate on your behalf!

For an example of the publicity I received in local media outlets about my walk, see:

And for an example of the blog I used to chronicle my daily activities see:


Even if someone supports you for ten cents a mile (or ten cents a cookie) it all adds up. Every dollar helps. All contributions will receive a receipt for income tax purposes. To set up a fundraising activity and have folks donate on your behalf, you can use the MightyCause app available on the IWMF website at: (if you need help with this, please contact the IWMF Office at [email protected] and a staff member will be in touch to assist you).

There are many charity walks, but they often take place in big groups for one day. For the IWMF Walk for Waldenstrom’s, we are trying to have individual or smaller group walks that take place in one or more days. Doing an activity over 30 days in September is also an option and is different enough that it might well catch the attention of a media news outlet. I was recently contacted by our local newspaper which is planning to do an article about my walk. If you are a volunteer who is going to try and walk a few miles each day, call your local newspaper or radio station and see if they will do a quick interview. You will be surprised how the publicity will change the amount of money you can raise.

My journey with WM began in 1970’s when my mother was diagnosed. At that time there were no treatments other than blood transfusions. She lived for approximately five years after her diagnosis.

In 2011 I was diagnosed and treated for low IgG. Despite my history I was assured I did not have WM. In 2014 when my haemoglobin dropped significantly, I was finally diagnosed at Dana Farber. My first treatment was Rituximab, Velcade and Dexamethasone. I then did two years of maintenance from 2015-2017. But in the summer 2020, my haemoglobin again dropped, and I started on Ibrutinib in October of 2020. Unfortunately, my atrial fibrillation returned and in April of 2021 I commenced Brukinsa which I have done very well on except when I was affected by COVID. I feel so blessed to live in an era where the IWMF has been able to sponsor so much ground-breaking research and made so many improvements to the life expectancy and quality of life for WMers.

All the support we can give the IWMF will allow for investment in new research that will help find even more treatments for WM and help our rare disease eventually be eradicated. Our support will also help the IWMF provide education and support to everyone around the world affected by the disease.

Please feel free to contact me at [email protected] if you need any advice or encouragement or if you have any questions.

Let’s all see what we can do to help the IWMF funded research conquer Waldenstrom’s Macroglobulinemia.

Thank you and good luck to any and all volunteers."

Paul Kitchen

IWMF Board Member

-Education -

BeiGene Webinar on July 27th at Noon U.S. ET

- Support -

TODAY! Cardio Flow for WM Exercise Class

2:00PM - 2:45PM U.S. ET

Contact Shelly for the Zoom link at [email protected].

WM People of Color Support Group

Friday, August 4th at 1:00PM U.S. ET

The WM People of Color Support Group will be having their next meeting for patients and caregivers in August. Attendees will join leader Paula on Zoom for a sharing session, which will last approximately one hour.


Friday, August 4th, 2023

1:00PM - 2:00PM U.S. ET


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

WM Community Corner

Mark Black (IWMF Database Manager) wore his IWMF Walk for Waldenstrom's shirt while hiking in Glacier National Park, Montana. Where is your IWMF swag taking you? Send a picture to Shelly at [email protected] to be featured in the newsletter!

The IWMF website calendar is updated regularly with upcoming IWMF Support & Specialty Topic Groups, International Affiliate Meetings, and IWMF Partner Meetings. Check out what's on the horizon HERE!

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.  

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

IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | [email protected] | 1-941-927-4963
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