The Terry Family, Volunteers


JULY 1, 1996
Brigham and Women's Hospital Magazine

It's not unusual for volunteers to put their heart and soul into Brigham and Woman's Hospital. But Patrick and Sharon Terry -- parents of Elizabeth, 8, and Ian, 6 -- are investing their time and energies in a deeply personal way.

Within the laboratory of Klaus Lindpaintner, MD, the couple discovered a hands-on opportunity to help their children, both of whom suffer from Pseudoxanthoma elasticum (PXE), a rare disorder that weakens elastic fibers in the skin and blood vessels and commonly leads to severely impaired vision. One night each week, husband or wife reads genetic fingerprints and logs data, advancing the search for a PXE gene by Lindpaintner, a member of the Division of Cardiology and co-director of Genetic/Molecular Epidemiology in the Division of Preventative Medicine.

But the couple's work extends far beyond the lab. The Terrys have founded PXE International, Inc., an organization that supports research, provides information to doctors and patients worldwide, and is building an international patient registry and tissue bank.

The Terrys were among hundreds of BWH volunteers -- 900 in 1995 -- who were honored for their contributions of time, skill and spirit at a celebration in April. Thanks to them, patients reaped the benefits of more than 129,500 hours of service.