High credit and honor should be given to the founder of the organization, Arnold Smokler, a retired pharmacist who was diagnosed with WM in l994. Finding little information available about the disease and no organized support group, he wrote to the National Organization of Rare Diseases (NORD) and requested the names of patients listed with their organization who had Waldenstrom’s macroglobulinemia. Upon receiving a list of 21 patients, Arnie mailed a questionnaire to each of them to inquire about their interest in forming a WM support group. All responded in the affirmative, and that was the beginning of the organization, which at that time was called the Waldenstrom’s Macroglobulinemia Support Group.
Next, Arnie started a newsletter that consisted of letters written by patients about personal experiences with the disease and with treatment therapies. From colleagues and contacts within the health professions, Arnie had access to professional journals, publications, and studies. Soon he expanded the scope of the newsletter by locating and publishing creditable information on WM, albeit in a very limited way. Arnie was careful to always reference his sources, and the newsletter earned respect among health professionals and the readership alike.
There is one thing that everyone who knew Arnie always remembers about him – he promptly returned every call he received from every patient and provided personal encouragement, references, and advice on accessing research findings and cancer institutes. He established the mind-set that all patients are in this together and that there is so little information out there that it is up to patients to develop an understanding of the disease and its treatment options.
Gradually the number of members increased from doctor referrals and word-of-mouth. By September 1995 a monthly newsletter was being mailed to 125 patients. In November of the same year Arnie established the Waldenstrom’s macroglobulinemia website.
In April 1996 Arnie arranged the first WMSG conference in Arlington, VA, which was attended by 75 people. In September 1996 the WMSG gained IRS approval as a not-for-profit organization under the IRS code, section 501(c)(3).
The second WMSG conference took place in April 1997, again in Virginia, with 200 attending. The membership had grown significantly, boasting 10 support groups in the U.S. and one in the U.K. This marked the evolution of the WMSG into an international organization. By early 1998 the organization became known officially as the International Waldenstrom’s Macroglobulinemia Foundation (IWMF).
The patient conferences, now known as Educational Forums, became an annual event, and at the June 1998 IWMF Educational Forum held in Atlanta, GA, the first Board of Trustees was elected. The nominees presented themselves to the assembled members and spoke about their qualifications and motivations. Twelve individuals were then chosen by vote of the members present.
The new Board of Trustees met in September of that year and began their work to develop an efficient and effective infrastructure. The Board approved a Committee structure and minimum Board policies for a start. An application for incorporation was submitted to the state of Florida. (Florida was selected because Arnie lived there and had already established a small office). The Articles of Incorporation and IWMF Bylaws were then developed.
Periodically this basic structure has been reviewed and revised when necessary for a more efficiently operating Board. However, the purpose and objectives of the IWMF today have remained generally the same as they were in the early years of the WMSG.
The IWMF has at present a worldwide membership of over 6,000, with support groups and affiliate organizations situated in virtually every continent. Today the IWMF:
- provides support to patients and their caregivers
- enables patients to communicate with one another
- sponsors WM educational forums featuring prominent physicians and researchers
- publishes booklets on WM and its treatment
- supports research aimed at ultimately finding a cure for WM
Since 2000 over six million dollars have been awarded to institutions conducting research on this disease.