Date: June 23, 2026

This June, we celebrate the 80th birthday of Carol Terry — co-founder of the Wilson Disease Association (WDA), longtime board member, and a driving force behind a community that has supported thousands of patients and families worldwide.

Carol’s journey with Wilson disease began in 1973, when she was diagnosed after nearly two years of misdiagnosis. Like many patients at the time, she faced uncertainty, limited information, and few support systems. Rather than stepping back, Carol chose to share her experience. Her personal story was first published in the American Journal of Nursing and later brought to a wider audience in “Live and Let Live,” a 1979 article in The New Yorker by Berton Roueché. These publications not only documented her experience but also helped connect her with other patients across the country — connections that would soon prove transformative.

In the late 1970s, a family in Binghamton, New York, was struggling to care for two young boys newly diagnosed with Wilson disease. Without adequate insurance and facing mounting medical costs, they became the focus of a grassroots fundraising effort. Inspired to do more, family friend John Chung began exploring the idea of forming a nonprofit organization to support not only this family but also others facing similar challenges. His search led him to Carol.

At the time, Carol’s published story had already reached individuals across the country living with Wilson disease. The network that formed around her became the foundation for the Wilson Disease Association. In 1983, the WDA was formally incorporated as a nonprofit organization, with Carol as a co-founder.

In those early years, the WDA was truly a grassroots effort. With modest resources — including just $850 from an initial community fund and annual membership dues of $12 — the organization relied on dedication, ingenuity, and a deep commitment to helping others. Communication was done by phone, by mail, and through typed newsletters with carbon copies. Carol herself authored informational brochures, spent hours in medical libraries gathering research for patients, and helped connect individuals and families for mutual support. Annual meetings were small, often held in homes or local restaurants, but they laid the groundwork for a growing and enduring community.

Carol served as President of the WDA for ten years, helping guide the organization through its formative period. Over the decades, she has continued to serve in multiple leadership roles, including Vice President, Treasurer, and Secretary, remaining a constant presence on the Board since its founding.

What began as a small, volunteer-run effort has grown into a global organization. Today, the WDA connects thousands of patients, families, physicians, and researchers across the United States and more than 40 countries. It offers educational resources, conferences, support networks, and a robust patient registry that contributes to advancing research and improving care. None of this would have been possible without the early vision and sustained commitment of leaders like Carol.

Beyond her organizational leadership, Carol’s willingness to share her personal story has had a lasting impact. At a time when Wilson disease was little understood and rarely discussed, her voice helped raise awareness, foster connection, and inspire action. Her story reminded others that they were not alone — and that together, they could build something meaningful.

As we celebrate Carol Terry this June, we honor not only her 80th birthday but also her extraordinary legacy. Her resilience, compassion, and leadership have shaped the Wilson Disease Association into what it is today — and continue to inspire the community it serves.

Happy birthday, Carol, and thank you for everything you have given to the Wilson disease community! If you’d like to personally acknowledge this birthday milestone, you can reach her at carol.terry@wilsonsdisease.org.