The Wilson Disease Association: Our Start

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 just been diagnosed with Wilson disease. The Pei family had no health insurance and did not qualify for Medicaid because they owned a small business. The Pei’s 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 them and others affected by Wilson disease. He did some research and found Carol Terry, who ultimately became a WDA co-founder. Carol had written an article about her experience being diagnosed with Wilson disease, which was published in the American Journal of Nursing in 1976. Another article about her experience appeared in the New Yorker magazine in 1979. Because of the articles, other Wilson disease patients from across the country had contacted Carol and those contacts provided the beginning of the membership list.

The WDA formally incorporated in 1983

The WDA was formally designated a 501(c) (3) tax exempt organization and incorporated in 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 WDA’s only assets were the $850 received from the Pei’s Lend-a-Hand fund, 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 WDA. Carol Terry wrote three informational brochures, and those were mailed upon request. 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 donation was received from the Combined Federal Campaign, which is a Federal workplace giving program. It was used to make a table top display and exhibit that was taken to local health fairs and national medical conferences to promote awareness of Wilson disease.

The WDA through the years

WDA logo 1983-2000In 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, a Wilson disease patient and obstetrician, became the third President of the WDA. At that time, the WDA had 145 paid members and about 400 on their mailing list.

WDA logo 2000-2010Under 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, who is the mother of two boys with WD, was elected as the fourth President of the WDA and is now the Vice-President of Scientific Affairs. That year 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.

WDA logo 2010 until 2020In 2014, the WDA had the financial resources to once again hire a part-time Executive Director. In 2016 Jean Perog, the first international President, was elected. Jean, who lives in Canada, was diagnosed with WD after her older brother was diagnosed with the genetic disease. In 2018, the WDA Executive Director position became full-time once again.

In 2019, the WDA held its highest attended conference in New York City. It was a two-day event with the first day dedicated to researchers and physicians who treat WD patients sharing their findings and experience with each other. The second day of the conference was dedicated to presentations for patients and families. In 2020, the first virtual conference was held due to the COVID-19 pandemic.

During 2020 the WDA worked on the development of a new rebranding campaign that included the design of a new logo and tagline. The Copper Connection newsletter became more robust with additional contributors and information. In 2021, the WDA updated its Mission, Vision and Values Statements to reflect its changing goals and response to research advances. In order to communicate better, the WDA created a YouTube channel, and to capture more donations, the WDA began accepting crypto currency donations.

The Board evolved to include a diverse composition of eight members and has committees working on communications, fundraising, policy, patient education, and professional affairs.

The WDA now boasts a database of 3,300 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 group meetings, newsletters, informational brochures, email updates, a video library and a website, all of which offer timely information and resources for our members. Having a social media presence on LinkedIn, Facebook (3,500 followers, 45 countries), YouTube, and Twitter (650 followers) has dramatically extended our reach to others not included in our member database. Hundreds of others seek support and information through Inspire’s online Wilson disease community.

WDA logo 2020 –

Special Mentions

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 was also 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.

In 2006, the WDA along with NIH-NINDS and NIH-ORD organized the first International Workshop on Wilson Disease and Other Disorders of Copper Metabolism. The aim of the Workshop was to facilitate a better understanding of the molecular and cellular pathophysiology of Wilson disease and to improve upon current diagnostics and therapeutics for disorders of copper metabolism. It brought together 29 experts in the study of copper metabolism, from eight countries, and offered a unique opportunity for these experts to exchange information and ideas.

In 2007, the WDA began a compassionate use program for patients in developing countries who do not have access to Wilson disease medications in partnership with MAP International. 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 37 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.

In 2013, the WDA raised funds for, and co-organized, the Human Disorders of Copper Metabolism: Recent Advances and Main Challenges symposium in Baltimore, Maryland. It featured 100 basic science and clinical researchers from the United States and 14 other countries. The NIH and Johns Hopkins University provided additional support. In 2014, the WDA provided partial funding for the 9th International Copper Meeting in Vico Ecquense, Italy. 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.

The largest project ever undertaken by the WDA is the Patient Registry Study. Patient registries and databases are key instruments used to develop clinical research in the field of rare diseases and improve patient care as well as healthcare planning and policy. They are the only way to gather data from many sources to achieve a sufficient sample size and quality of information for epidemiological and clinical research. This longitudinal study has already provided significant data to researchers and is not yet completed. The idea was first considered in 2012 and it was started in 2018. Between Oct. 2018 and April 2022, the WDA contributed over $2,470,000 toward the work of the Patient Registry Study.

The WDA’s medical advisors

The WDA formed a Medical Advisory Committee in the late nineties that includes 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 two other excellent treating physicians joined MAC: Dr. Regino Gonzalez-Peralta, and Dr. Paula Zimbrean. Later, Drs. Jeff Bronstein and Peter Hedera were added. The MAC generously offers their time, expertise, 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 Wilson Disease Centers of Excellence in the United States, Europe and India that meet the criteria of being knowledgeable about all aspects of Wilson disease. The goal is to expand the number of CoEs to accommodate more patients. All 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 many other countries. While the WDA is the largest patient support group for Wilson disease, other such groups also exist in many countries around the world. Additional support contacts in the US and other countries are listed on our website as well.