International Waldenstrom’s Macroglobulinemia Foundation



It is with great pleasure that we announce Sue Herms as the 2020 recipient of the Judith May Volunteer Award. Under normal circumstances, Sue would have received the award formally at the IWMF Patient Educational Forum. With the event being cancelled this year, true to form, Sue wanted to make sure that she had an opportunity to give a proper acceptance speech and to pass along her sentiments to fellow members of the IWMF. These comments are provided in the final paragraphs of this notice.

The annual award recognizes the spirit of volunteerism that Judith May so aptly demonstrated throughout her 20+ year career with the IWMF, including leadership in member services, research, advocacy, and as president of the IWMF from 2005 to 2012.

Sue, for her part, has served the IWMF in several capacities: as a Board Member, skillful editor and medical reporter for the Torch, member of the IWMF Research Committee (where she was instrumental in maintaining active communications between the IWMF and its research award grantees), and the Educational Forum Planning Committee. If you’ve attended an Ed Forum, undoubtedly Sue’s painstaking attention to detail helped ensure that you had a fantastic experience from start to finish.

Here is Sue’s statement:

“I am very honored by this award, and I am grateful to the IWMF Board of Trustees for presenting it to me. I also want to thank former IWMF President Judith May, for whom the award is named and whose work for the Foundation was the inspiration for it.

“My gratitude to the IWMF extends far beyond receiving this award. When I was diagnosed in 2004 at the fairly young age of 54, like most of you I was afraid—and I had so many questions! I was fortunate to find the IWMF website shortly after my diagnosis. At that time, it was one of the few places to read accurate information about WM. Significantly, I learned that the 5-7 year prognosis I had seen elsewhere was just not true. Here I am, 16 years later and 70 years old, having gone through only one series of treatments, and am very much alive and feeling fine! The IWMF website, its online discussion forum (at that time called IWMF-TALK), the LIFELINE, and the Torch were, and continue to be, my sources of information and support.

“Because of the gratitude I felt, and still feel, to the IWMF, I gradually became involved in volunteering for the Foundation, starting in 2007 with the Torch, for which I wrote several articles about WM and treatments for it. I was learning about the disease, and at the same time attempting to pass along to others what I had learned, but in easier-to-understand language. I was then asked to join the Board of Trustees, and eventually I participated in the work of several of its committees. My volunteer work is how I ‘pay it forward’ to the Foundation and to all WMers. I urge those of you who can to ‘pay it forward’ too, and consider volunteering in some capacity for the IWMF.

“My work for the Foundation has not only given me knowledge and support, it has provided me with the opportunity to meet so many of my fellow WMers and their caregivers and a number of the physicians who work on our behalf. These wonderful people are my friends and my source of inspiration. Sadly, I have lost some of my WM friends through the years, but the memories I have of them, the many friends I still have, and the anticipation of making new friends keep me going, in the hope that someday soon we will have a cure for our disease.

“I am sorry that we could not be together this year for our Ed Forum in Seattle and receive comfort from each other’s presence. But I look forward to next year’s Ed Forum and the Ed Forums to come. In the meantime, stay safe and well during this difficult time for our world.”


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