High credit and honor should be given to the founder of the organization, Arnold Smokler, a retired pharmacist who was diagnosed with WM in 1994. Finding little information available about the disease and no organized support group, he wrote to the National Organization for Rare Disorders (NORD) and requested the names of patients listed with that organization who had Waldenstrom’s macroglobulinemia (WM). 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 mindset 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 WM 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 US and one in the UK. 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 (the IWMF).
The patient conferences, now known as Educational Forums or Ed 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 with a core set of Board policies. 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 the 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.
Since its inception, the IWMF Board Members have used their unique talents and skills to expand and improve support and services offered to the global WM community.
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 1999, the IWMF has invested over $30 Million dollars in research on our disease
Did you know that taken together all rare diseases affect about 30 million Americans and 30 million Europeans? With only 1,500 newly diagnosed patients a year in the US and similar levels in Europe, WM is very rare.