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History and Profile of The Wilson Disease Association

The Wilson Disease Association (WDA) was formed in 1978 by a group of individuals in Binghamton, New York. They were trying to help a family with two young boys who had just been diagnosed with Wilson Disease. The Pei family had no health insurance and did not qualify for Medicaid because they owned a business. They were having difficulty paying for medical care and medication, so the community started a collection for them in a Lend-a-Hand fund.

John Chung, a friend of the Pei family, came up with the idea of starting a non-profit organization to help the Pei family and others affected by Wilson Disease. He did some research and found Carol Terry. Carol had written an article about her experience as a Wilson disease patient, which was published in the “American Journal of Nursing” in 1976. Another article about her appeared in the “New Yorker” magazine in 1979. Because of the articles, other Wilson disease patients from across the country had contacted Carol. Those contacts provided the beginning of a membership list.

The WDA was formally incorporated in March 1983 in the state of New York with John Chung as the first president. The Board of Directors consisted of six to seven members; all were Wilson disease patients or patients’ relatives. There were no formal Board meetings; decisions were made by phone or through the mail. Annual membership meetings were held at the Pei family restaurant, or a member’s home, with between ten and twenty in attendance. The Association’s only assets were the $850 received from Lend-a-Hand, and annual dues of $12 per member.

A small newsletter was sent out several times a year, letters were typed (with carbon copies) to patients, and membership applications were mailed to anyone who contacted the Association. Carol Terry wrote three informational brochures, and those were mailed upon request as well. Hours were spent in medical libraries collecting articles on various aspects of Wilson disease, and those were sent to patients with specific questions. The group frequently put patients in the same geographic area in touch with one another for mutual support, and spent time on the telephone talking to Wilson disease patients and their families. One year a $500.00 donation was received from the Combined Federal Campaign. It was used to make a table top display and exhibit at local health fairs and national conferences to promote awareness of Wilson disease.

In 1982, John Chung and Carol Terry attended a meeting of rare disease non-profit associations, sponsored by the University of Michigan. The meeting was organized to support the passage of the Orphan Drug Act. It also was the impetus for the formation of the National Organization for Rare Disorders, of which the WDA is a charter member. The WDA also helped to form the Alliance for Genetic Support Groups, to which the WDA still belongs. Dr. George Brewer was just beginning clinical trials to test the use of Zinc Acetate to treat Wilson disease. It was his belief that the accepted standard of treatment for Wilson sisease, penicillamine, worsened neurological symptoms in some patients and had many untoward side effects. This belief resulted in other clinical trials, which still exist today, in an effort to find the best possible treatment modalities for all presentations of Wilson disease.

In 1984, Carol Terry became the second president of the WDA. Her efforts on behalf of the WDA continue to the present as the current secretary of the WDA. In 1994 Dr. H. Ascher Sellner became the third president of the WDA. At that time, the WDA had 145 paid members and about 400 on their mailing list.

Under the direction of Dr. Sellner, the WDA continued its grassroots efforts until 1998 when a decision was made to expand the Board. The Board also began to meet once a year, prior to the WDA Annual Conference, and later increased the number of meetings annually to at least three, with two meetings in person and the rest by teleconference. In 2003, Mary Graper was elected as the fourth president of the WDA and the WDA hired its first paid employee -- part-time Executive Director, Kimberly Symonds. At present, the Board has a diverse composition of 9 members, with international representation and plans to expand in the near future. Through the efforts of Presidents Sellner and Graper, Executive Director Symonds, and the WDA Board, the Association now boasts a membership of 948, with 150 members from countries outside of the United States. Basic membership is $35.00, with many membership renewals being $1,000 or more. Income for the year 2005 was over $100,000, with 80% being used for member program services. The Association currently offers an annual membership conference and periodic support conferences, quarterly newsletters, informational brochures and an Internet website, all of which offer timely information and resources for members.

Since 2004 the WDA has sponsored an annual writing contest for medical students. Each year students are challenged to write a paper on a topic related to Wilson’s disease. The WDA Medical Advisory Board selects first, second, and third prize winners, and the first prize winner is invited to attend the annual conference, as a guest of the WDA, to receive the $1000 prize.

In 2006, the WDA offered its first request for grant proposals of up to $30,000 for research projects to further knowledge about Wilson disease.

The efforts of the WDA have become international in scope. Related groups exist in Austria, Brazil, Denmark, Germany, the Netherlands, Romania, and the United Kingdom. Additional support contacts can be found in other countries as well. In addition to physicians in the United States, the countries of Austria, Brazil, Canada, China, Costa Rica, Ethiopia, Germany, Hungary, India, Israel, Italy, Japan, New Zealand, Poland, Romania, Sweden, and Yugoslavia have been identified physicians able and willing to treat Wilson disease patients.

The WDA’s Medical Advisory Board consists of four recognized Wilson disease experts: Drs. Michael Schilsky, Frederic Askari, Sihoun Hahn and Eve Roberts. They generously offer their time, knowledge, and support to the WDA Board and members, which enables the WDA to provide the most current and accurate medical information. With their assistance, the WDA has designated eight Wilson Disease Centers of Excellence that meet the criteria of being knowledgeable about every aspect of Wilson disease.

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