History and Profile of The Wilson Disease Association
A group of individuals in Binghamton, New York formed the Wilson Disease Association (WDA) in 1978. They were trying to help a family with two young boys who had been just diagnosed with Wilson disease. The 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 who had 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 (NORD), of which the WDA is a charter member. The WDA also helped to form the Alliance for Genetic Support Groups (now Genetic Alliance, www.geneticalliance.org), 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 disease, penicillamine, worsened neurological symptoms in some patients and had many untoward side effects. This belief resulted in other clinical trials, which are ongoing 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 he made a decision 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, a part-time Executive Director who later became a full-time employee. A few years later, due to financial concerns, the Executive Director position was eliminated and operations continued under the sole leadership of Mary Graper and the WDA Board of Directors. At present, the Board has a diverse composition of nine members, with international representation.
Through the efforts of Presidents Sellner and Graper, the former Executive Director, and the WDA Board, the Association now boasts a database of 2,253 patients, family members and physicians, and its members are from the United States and 47 other countries. We currently offer an annual membership conference and periodic support conferences, biannual newsletters, informational brochures and an Internet website, all of which offer timely information and resources for our members. Having a social media presence on LinkedIn, Facebook (1,850 followers, 45 countries), and Twitter (350 followers) has dramatically extended our reach to others not included in our member database.
In 2006, we offered our first request for grant proposals of up to $30,000 for research projects to further knowledge about Wilson disease. This program was discontinued in 2009 due to the lack of sufficient funds to continue it. Since that time, financial resources have improved enough to allow us to fund several important research meetings. In 2013 we raised funds for and co-organized the Human Disorders of Copper Metabolism: Recent Advances and Main Challenges research focused symposium in Baltimore, Maryland. It featured 100 basic science and clinical researchers from the United States and fourteen other countries. The NIH and Johns Hopkins University provided partial support. Last year the WDA provided partial funding for the 9th International Copper Meeting in Vico Ecquense, Italy. Earlier in 2015, the WDA was pleased to support the Cell Biology of Metals Gordon Research Conference (GRC) in Mount Snow, Vermont and a doctoral thesis entitled, Copper-associated hepatitis in the Labrador retriever, research that was conducted in The Netherlands.
In 2007, the WDA began a compassionate use program for patients in developing countries who do not have access to Wilson disease medications. This successful program, which continues today, is possible because of product donations from the pharmaceutical companies who supply these medicines. Through this program, we have been able to help patients in nineteen different countries. Another compassionate use program, for patients in Canada needing trientine, began in 2010. Unfortunately, it was discontinued in 2014 due to the stoppage of donated Syprine (trientine) by the pharmaceutical company.
The WDA is fortunate to have a Medical Advisory Committee (MAC) that consists of four internationally recognized Wilson disease experts, Dr. Michael Schilsky, Dr. Frederick Askari, Dr. Sihoun Hahn, Dr. Eve Roberts, and two internationally recognized copper researchers Dr. Svetlana Lutsenko and Dr. Dennis Thiele. In 2015 three other excellent treating physicians, Dr. Regino Gonzalez-Peralta, Dr. Tamir Miloh, and Dr. Paula Zimbrean, joined the MAC They generously offer their time, knowledge, and support to the WDA Board and members, which enables us to provide the most current and accurate medical information. With their assistance, the WDA has designated seven Wilson Disease Centers of Excellence that meet the criteria of being knowledgeable about every aspect of Wilson disease. Every piece of medical information that is published by the WDA is reviewed and approved by our medical advisors.
In addition to the Centers of Excellence physicians, we have identified other physicians who treat Wilson disease in the United States and in the countries of Austria, Brazil, Canada, China, Costa Rica, Ethiopia, Germany, Hungary, India, Israel, Italy, Japan, New Zealand, Poland, Romania, Spain, Sweden, United Kingdom, and Vietnam.
While the WDA is the largest patient support group for Wilson disease, other such groups exist in Argentina, Austria, Brazil, Bulgaria, Denmark, France, Germany, Italy, the Philippines, Poland, Romania, Spain and the United Kingdom. Additional support contacts exist in other countries as well.