International Waldenstrom’s Macroglobulinemia Foundation



This week is National Volunteer Week in the US. We should all take a moment to thank the volunteers who make the IWMF work for all of us.

The IWMF is volunteer-led and largely patient-funded. We were founded in 1994 by a patient, Arnie Smokler, a retired pharmacist. Since then, hundreds of generous volunteers have built the IWMF into a vibrant worldwide organization dedicated to a simple but compelling vision: “Support everyone affected by Waldenstrom’s macroglobulinemia (WM) while advancing the search for a cure.”

Almost everything we do is made possible by volunteers such as:

  • Peter DeNardis, an IWMF Board member since 2008 and the much beloved moderator of IWMF Talk. Read Peter’s story here.
  • Marcia Klepac, an IWMF Board member since 2012 and the resourceful coordinator of the IWMF Support Group Leaders. Read her story here.
  • Patrice Ostermann, the IWMF Affiliate leader in France, whose dedication to supporting the needs of French-speaking WMers led him to almost single-handedly translate many of the IWMF publications into French….no small task that totaled over 250 pages. Check out Waldenström France(link is external).
  • Stu Boland, a Support Group Leader from Calgary, Canada. Read his story here.
  • Dr. Neal Makens, who serves on the IWMF Research Committee that decides where we should invest our scarce research resources. Read his recent article in the Torch.
  • Andrew Warden, the leader of WMozzies, the IWMF Affiliate in Australia, who has helped make a small, fledgling WM organization heard in a large country by establishing a strong relationship with the Leukaemia Foundation of Australia. Read more about WMozzies(link is external).
  • Alice Riginos, the editor of the highly readable and most informative IWMF Torch newsletter, and winner of the Judith May Volunteer of the Year award in 2015. Learn more about Alice here.
  • Mitch Orfuss, the NYC Support Group Leader, the IWMF LIFELINE contact for ibrutinib, a member of the IWMF Fundraising Team, and an eloquent presenter at the Workshop on Oral Therapies in Lymphoma: Scientific, Policy and Regulatory Considerations on September 10-11 at the Omni Shoreham Hotel in Washington DC. Read more here.
  • Sue Herms, on the IWMF Board of Trustees since 2009, a member of the IWMF Research Committee, Associate Editor of the Torch, the author of the incredibly useful Medical News Roundupand the coordinating force behind nearly all IWMF publications. See her roundup of what happened at the last ASH (American Society of Hematology) meeting.

By now you probably have gotten the idea that the IWMF is able to provide vital services like support groups, publications, discussion lists, and educational meetings only because of the many volunteer patients and caregivers who spend an enormous amount of time making the IWMF work for WMers around the world.

Please join me in saluting all of our many, many volunteers. If you are so moved, feel free to donate to the IWMF in honor of any of these or any other IWMF volunteers. You can make a donation easily here.

And if you want to help your WM colleagues by joining the ranks of IWMF volunteers, just fill out this form, and you can help us make the world a better place for WMers everywhere.

Remember, with the IWMF you are not alone!

Carl Harrington
Volunteer President of the IWMF


  • 6144 Clark Center Ave.
    Sarasota, FL 34238
  • Phone: 941-927-4963
  • Fax: 941-927-4467
  • [email protected]